Monday, October 3, 2011

HS and Self Image

Living with a painful, disfiguring, dibilitating disease is very hard, not just physically but emotionally. You tend to push people away from you because you do not believe you are worthy of anyones affection. Your think your scars make you hideous. Why would anyone want to sit close to your grotesque body. No matter how much reassurance there is you still can't get the idea permanently out of your head. It may go away for a while but it will eventually creep back.

Your self image becomes damaged.

This disease makes you feel useless. The pain stops you from doing the simplest of things. Even brushing your own hair becomes impossible to do. When you finally decide you are going to work through the pain no matter how much it hurts you very often rip your wounds open wide. This makes things even worse. So you sit, rest and try to heal and in doing so start feeling useless all over again. You want to be able to care for yourself and those around you but you can't. You find yourself feeling like a burden to those you love. You figure that sooner or later they will wish you were not there, that they could run away.

Your self image becomes more damaged.

Sex, one of the most joyous forms of physical intimacy between two people who love each other. But what if your groin area is permanently scarred? What if you constantly have oozing painful lumps throughout your external sex organs? What if the very act of intercourse causes severe pain? How long will your partner stay with you when they cannot share the intimacy that a life long couple should enjoy? If you love your partner you begin to think that it would be best for them to move on through life without you. That they would be happier apart from you than with you. Afterall, you reason, even if the pain and oozing were not there why would anyone ever find you sexually desireable with all your many scars ?

Your self image becomes more damaged.

You love your children with every fibre of your being. They bring joy to your limited existence giving you a reason to keep going. Then one day you come to the realization that you may have passed this ugly, horribly painful disease to them. That they may have to live through the agony that you suffer daily. You begin to blame yourself for possibilities, what ifs? In your mind it is ok for you to suffer but not your children. Please not them. You become heavy hearted and guilt ridden. Your self loathing grows and guilt comes to the fore front. You fear for your children and blame yourself.

Your self image becomes more damaged. 

People invite you to social gatherings but more often than naught you find that you are not physically able to attend. So you do not show up. You no longer take walks or visit friends because of the pain but more so because of the smell that you believe everyone can detect. You wash, clean and perfume but still the thought of someone smelling the discharge from your wounds terrifies you. What if a lesion bursts and leaks through your clothing? Instead you sit at home alone. At first friends stop by and help you pass the time but after a while the visits become fewer and fewer. You really can't blame them since they do have your own lives and you figure that they are probably tired of seeing you ill all the time anyways. You sit at home alone. Your spouse and children become your entire life so much that you are afraid of smothering them. They do a lot for you they shouldn't have to entertain you as well. You feel more and more lonely. You begin to forget what it is like to have friends, to play cards, to have a drink, to socialize. You start to wonder exactly what is wrong with you that is so horrible?

Your self image becomes more damaged.

So why am I writing this all down? Why am I putting to words what many HS'ers feel not just myself? So you can understand the demons I fight everyday. Not only must I live with painful swellings, not only do I loose my mobility, not only do I smell bad from all the discharge... no none of that is enough. This disease affects you all those ways and then puts the final blow upon your head by mentally torturing you. By taking away your self image and self worth. By writing down how it feels, what it does to my mind, I am in my own way fighting against it. The keyboard is my therapist allowing me to express the way I feel at times. Is it unpleasant? hell ya!! but it's out now, I can back away from it all and look objectively at it and gain a well earned reprieve.

It's a constant struggle to live day to day physically and mentally. If someone you love has HS you need to know about these ideas which cross our minds. You need to understand them and not belittle them. You cannot change the way a person feels about themselves at certain periods in their life but you can understand. When they feel mentally/physically at their worst you can hold them and tell them that you are there for them. 

This letter is also an apology to someone I love very deeply. I came very close to destroying a good thing recently by trying to push it away with all the effort I could muster. By trying to get rid of someone I loved very much figuring it was better for everyone involved. Feeling useless, hopeless and undeserving. For that I am deeply sorry. Perhaps I've not damaged things too badly. Only time will tell.

Learn from my mistakes. Do not be afraid to vocalize how you feel. Allow yourself to feel all those emotions but in the end remind yourself that you are worthy of being loved. That you are a beautiful person who did nothing wrong. There is no reason to feel useless, to feel guilty. HS is a disease but it is not you. Do not make my mistake and allow it to control you. In the end you have self worth. You are important. You deserve to be loved.

Do not let HS damage your self image.

Black Cumin

I am being a guinea pig for back cumin seeds and HS. I figured out today that I have been taking the cumin for 16 days. The first week I took 2 capsules twice a day. Now I am taking 2 capsules 3 times a day.

For the first time in as long as I can remember I only have one painful lesion.
I have lumps all throughout my groin but they don't really hurt unless I hit up against them accidentally.

Now something else I thought about today. I have always taken turmeric 2 capsule 3 times a day as well for a natural blood thinner. I started taking the turmeric for my HS and had limited success. It did help but not long enough. At the time I started taking turmeric I was on Coumadin because my blood clotted too easily. I was taken off the coumadin after 6 months of turmeric as my blood tests kept coming back fine.

SO anyways the entire time I have been trying the cumin I have also been taking the turmeric just for a different reason so I am not too sure if the cumin is healing my skin or if the combination of the two spices is what is doing the trick. I am however healing. My current break from pretty well a full body flare is now officially lasting longer than it normally does. Does that mean the cumin is working. I do believe it is still way too early to tell.

Later on I will take some pictures of the HS sites on my body and pair them up with images taken 6 weeks ago. Then you guys can see the progress.

One last thing to throw into the mix, perhaps my own mind is willing the cumin to work????

Friday, August 5, 2011

Updated Images - August 2011

This is a recent update of my situation first the right armpit.

left armpit

groin area - yes they are as big as they look

right breast. The inflammation goes into the nipple.

Tuesday, June 14, 2011

New comers

to anyone new to HS please click on this link first and read about the disease.

Sunday, June 12, 2011

This disease sucks

Ya I know it could be so much worse. At least I'm not dying but often I feel dead. There is so much in this life that I want to do. So much that I need to do but as it is I often just sit here in pain watching life pass me by. It really sucks. I've got to find someway to manage the pain. I've decided to go looking online to see if I can find information on meditation and pain management that uses the mind. At least I can't become addicted to that right? I need to learn how to go about my day to day life even when it hurts badly. You know I actually got a full nights sleep last night. Normally I wake up every time I move. It hurts and the pain wakes me up. It's impossible for me to sleep without moving. I get way to stiff. I guess it's a side effect of old age.

Hehehe ya I've faced the fact that I've getting old. More than half my expected life span is over now. I've never been afraid of growing old but I did expect it to be a lot different. I didn't expect a rare incurable disease that few people seem to know about, that no one knows the origins of that there is no viable treatment for, little or no research bah. But that is my lot in life.

I've recently come to terms with the fact that I am not ugly, useless or a horrible person. That's just a trick this disease plays on people.

Anyways enough of that rant.

Pain management techniques:

Using self hypnosis:

Sunday, May 22, 2011

A Letter To People Without Chronic Pain

Having chronic pain means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about chronic pain and its effects, and of those that think they know, many are actually misinformed.

In the spirit of informing those who wish to understand... These are the things that I would like you to understand about me before you judge me...

Please understand that being sick doesn't mean I'm not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit, sometimes I probably don't seem like much fun to be with, but I'm still me-- stuck inside this body. I still worry about school, my family, my friends, and most of the time - I'd still like to hear you talk about yours, too.

Please understand the difference between "happy" and "healthy". When you've got the flu, you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time. In fact, I work hard at not being miserable. So, if you're talking to me and I sound happy, it means I'm happy. That's all. It doesn't mean that I'm not in a lot of pain, or extremely tired, or that I'm getting better, or any of those things. Please don't say, "Oh, you're sounding better!" or "But you look so healthy!¨ I am merely coping. I am sounding happy and trying to look normal. If you want to comment on that, you're welcome.

Please understand that being able to stand up for ten minutes doesn't necessarily mean that I can stand up for twenty minutes, or an hour. Just because I managed to stand up for thirty minutes yesterday doesn't mean that I can do the same today. With a lot of diseases you're either paralyzed, or you can move. With this one, it gets more confusing everyday. It can be like a yo-yo. I never know from day to day, how I am going to feel when I wake up. In most cases, I never know from minute to minute. That is one of the hardest and most frustrating components of chronic pain.

Please repeat the above paragraph substituting, "sitting", "walking", "thinking", "concentrating", "being sociable" and so on ... it applies to everything. That's what chronic pain does to you.

Please understand that chronic pain is variable. It's quite possible (for many, it's common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the next room. Please don't attack me when I'm ill by saying, "But you did it before!" or Oh, come on, I know you can do this!" If you want me to do something, then ask if I can. In a similar vein, I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able, please try to always remember how very lucky you are--to be physically able to do all of the things that you can do.

Please understand that "getting out and doing things" does not make me feel better, and can often make me seriously worse. You don't know what I go through or how I suffer in my own private time. Telling me that I need to exercise, or do some things to get my mind off of it¨ may frustrate me to tears, and is not correct if I was capable of doing some things any or all of the time, don't you know that I would? I am working with my doctor and I am doing what I am supposed to do. Another statement that hurts is, "You just need to push yourself more, try harder..." Obviously, chronic pain can deal with the whole body, or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain than you could ever imagine. Not to mention the recovery time, which can be intense. You can't always read it on my face or in my body language. Also, chronic pain may cause secondary depression (wouldn't you get depressed and down if you were hurting constantly for months or years?), but it is not created by depression.

Please understand that if I say I have to sit down/lie down/stay in bed/or take these pills now, that probably means that I do have to do it right now - it can't be put off or forgotten just because I'm somewhere, or am right in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.

If you want to suggest a cure to me, please don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. Lord knows that isn't true. In all likelihood, if you've heard of it or tried it, so have I. In some cases, I have been made sicker, not better. This can involve side effects or allergic reactions. It also includes failure, which in and of itself can make me feel even lower. If there were something that cured, or even helped people with my form of chronic pain, then we'd know about it. There is worldwide networking (both on and off the Internet) between people with chronic pain. If something worked, we would KNOW. It's definitely not for lack of trying. If, after reading this, you still feel the need to suggest a cure, then so be it. I may take what you said and discuss it with my doctor.

If I seem touchy, it's probably because I am. It's not how I try to be. As a matter of fact, I try very hard to be normal. I hope you will try to understand. I have been, and am still, going through a lot. Chronic pain is hard for you to understand unless you have had it. It wreaks havoc on the body and the mind. It is exhausting and exasperating. Almost all the time, I know that I am doing my best to cope with this, and live my life to the best of my ability. I ask you to bear with me, and accept me as I am. I know that you cannot literally understand my situation unless you have been in my shoes, but as much as is possible, I am asking you to try to be understanding in general.

In many ways I depend on you - people who are not sick. I need you to visit me when I am too sick to go out... Sometimes I need you help me with the shopping, cooking or cleaning. I may need you to take me to the doctor, or to the store. You are my link to the normalcy of life. You can help me to keep in touch with the parts of life that I miss and fully intend to undertake again, just as soon as I am able.

I know that I have asked a lot from you, and I do thank you for listening. It really does mean a lot.


Friday, May 13, 2011

Updated images

I have decided to post images of where I am right now and update those images to see if progress has been made. I will not post all the areas affected as some are rather personal considering my labia are heavily infected. What I do post here should be enough to give you an idea. Please remember no matter how bad these images look to you there are people out there with this disease who are 10 times worse that I am.  The only other option I have open to me is surgical. I've seen pictures of the scars and disfigurement left behind after the surgeries if at all possible I would want to avoid this.

Now for the images:

Left Armpit

Right Armpit

top of right breast above the nipple

underside left breast - this area has been healing really well compared to how it was last year

underside of right breast - also healing quite well since last year

front groin area - this area is getting worse all the time and is the reason why I have trouble walking. The lump area is over 4 inches across and hurts like hell. New areas are forming around it. Last year there was only a few lumps.

When I mention last year that is when my last set of pictures were taken. There is a topic on my blog. look to the left where my links are and you will see one that says My HS Story that link will lead you to the previous pictures. Most areas have healed somewhat from last year except my groin and left underarm and now my right underarm is getting bad again.

HS Awareness Purple Ribbon Campaign

Hello there! I’m Teri Korri, and, I’m your neighbour. First of all, thank you for taking time to read this. For 13 years, I have suffered from a very rare auto immune condition named Hidradenitis Suppurativa, otherwise known as HS. Please read below.

WHAT IS HIDRADENITIS SUPPURATIVA?... (HS), also known as 'Acne Inversa', is a physically, psychologically, and socially disabling disease affecting inverse areas of the body (those places where there is skin-to-skin contact - armpits, groin, breasts, etc.), and where apocrine glands and hair follicles are found. It is non-contagious and recurrent; typically manifesting as a progression from single boil-like, pus-filled abscesses, or hard sebaceous lumps, to painful, deep-seated, often inflamed clusters of lesions with chronic seepage involving significant scarring. Abscesses may be as large as baseballs, are extremely painful to the touch and may persist for years with occasional to frequent periods of inflammation, culminating in drainage, often leaving open wounds that will not heal. These "flare-ups" are often triggered by stress, hormonal changes, or humid heat. Drainage of the lumps provides some relief from severe, often debilitating, pressure pain; however, pain occurs 24 hours a day, 7 days a week for HS sufferers during flare-ups, and is difficult to manage. Persistent lesions may lead to the formation of sinus tracts, or tunnels connecting the abscesses under the skin. At this stage, complete healing is usually not possible, and progression of the disease in the area is inevitable. Occurrences of bacterial infections and cellulites are likely at these sites. Fever and fatigue caused by acute inflammation and the physical restrictions caused by pain and skin deformation, people often cannot work, drive, exercise or even perform day-to-day tasks, and are ashamed to go out in public. HS sufferers may go through severe bouts of depression, avoid public and inter-personal contact, become sedentary and often overweight. HS typically goes undiagnosed for years because patients are ashamed to speak with anyone. When they do see a doctor, the disease is frequently misdiagnosed. Only relatively few physicians are able to recognize it and even when they do, suggested treatments are often ineffective, temporary and sometimes even harmful. There is no known cure or any consistently effective treatment. In advanced, chronic cases, surgery is often the choice, but recurrences of HS are not uncommon. Historically, HS has been considered a rare disorder, because it is difficult to accurately estimate the number of HS victims; they conceal their condition, even from friends and close relatives. Estimates, however, indicate at least 1 million - potentially up to 12 million - Hidradenitis Suppurativa sufferers in the United States alone!

So now that you have read a brief description of what HS is, you may understand why not many people have ever heard of HS. Having been a victim of HS for 13 years, I am tired of being told there is no hope, that no research is being done because it is not considered profitable enough. It is my hope to begin to spread the word about HS with one person, one neighbourhood at a time. In an effort to raise awareness for HS, I have taken this task upon myself, with your help of course..…..the task is easy, the rewards will be huge. Purple signifies the color for auto immune diseases. All I ask that you do is simply tie a ribbon around something in your yard. A tree, a mailbox, a light post, anything in your yard that will make the ribbon visible from the street. I ask that you leave this ribbon up for at least two weeks and at the end of that time, pass on this information, to a family member, a co-worker, or a friend, a church member …basically anyone. Chances are that besides myself, you actually are acquainted with someone who has HS but has never disclosed this information to you due to the overall embarrassing nature of the disease. Chances are that if half of you do pass this on, someone who has or knows someone with HS will receive this. So… on that note, I am asking for your help in helping me to get the word out and help raise awareness for this “hidden” debilitating illness, HS…“The hidden disease“. There are so many who suffer in silence and I feel I need to help to change that. This is for now, the only way I can begin to undertake this task. To those of you on Facebook please consider changing your profile image to a purple ribbon and directing people who ask you questions to this note.

I really want to thank you for your time and for your participation in my efforts to bring this to light so that more people know that we are here and just want to be heard so that one day, we may find a cure, or even a suitable treatment. I appreciate your support more than you can imagine. Doing such a small thing can possibly help millions world wide.

For more information on HS please visit my blog at for the my story with images

Again, I thank you from the very bottom of my heart. This campaign originally started by Dale Rickwood 

Thursday, May 12, 2011

Awareness campaign

There is a campaign on Facebook to help raise awareness of Hidradenitis Suppurativa
and here
and here
and here

If you have a Facebook account go read one of these links and hit like. Let's get the word out!!!! Also the woman who started all this, Dale Rickwood has managed to get some press for the event. ABC news video

News article

Finally there is an online petition with currently over 10,000 signatures. Please sign it to help us find a cure.

Friday, April 29, 2011

So Where am I now?

2010 was a very interesting year to say the least. It had some really good times and some really nasty ones. I think what is strangest of it all is the fact that I am right now exactly where I was at this time last year. I guess it goes to show that even though things change they still somehow stay the same. Mind you I'm not complaining. My health was so stable last summer that I was able to go vacationing with George and the boys, make some new friends and attend several concerts in Toronto. I had a fantastic summer, one I will always remember. I just hope it's not the last one. If I have to, I'll wait a few years for another one like it. I just want that hope that it may happen again. People need things to look forward to right?

I've come to realize that I will always have periods in my life where I will be basically useless to those around me and will completely depend on them to meet my needs. When you think about it it's a lot to ask those who love you. It really makes you think you know. Is it fair to ask them to live this way? I know I have no choice in the matter at all but they do. So really what is fair? I don't know. I have to remember that if the tables were turned I would do the very same for someone I loved. That thought doesn't stop me from feeling needy and useless though and that's a horrible feeling especially when someone is used to being able to take care of themselves.

Pain. It scares most people and with good reason but believe it or not pain can become like an old friend. I guess that sounds really strange and I really have no way to explain it, not verbally anyways. For the last 4 months I have been living with pain daily. Some days it's a dull throb and burning sensation. Most days it's strong enough to bring tears to my eyes. It's frustrating, depressing and exhausting. The worst part believe it or not is the boredom. My brain is crying out at times for something to do. Some days I can get up and putter around a bit, do my dishes maybe even sweep. Then there are days like today when I need someone sitting outside the bathroom while I wash and clean up in case I fall down because I would not be able to get back up. Where someone has to follow me around in case I topple over and where sleep is a distant memory, something I hope to be able to achieve sometime in the next few days.

I have to keep reminding myself that I have a good life, that there are so many people out there who are so much worse off than I am. I have hope for better days something others do not. I am grateful for what I have. I am happy to be alive. I am blessed in so many ways. This disease is my cross to bear and carry it is something that I will do. Mind you I am only human and being so I need to bitch every once in a while. I guess that is what this note is in a way.

I don't want anyone's pity. I don't want anyone to feel sorry for me. I don't want to be avoided. Sometimes I just want to scream out to the world... look at me I'm over here! I'm not a dirty secret that needs to be hidden away!!

People really don't know how to deal with me when I am like this and I really don't blame them. Years ago before all this happened to me I would have probably avoided someone suffering as I am as well. Well not totally, but it would have taken great thought to go visit them when they were ill. I guess people figure when you are sick that you really don't want someone around. Nothing could be further from the truth. Boredom sets in rather quickly, then loneliness and finally depression. It's like you become a social outcast rather quickly. The loneliness is the worst. But then I don't want anyone to feel uncomfortable around me either. One of those "damned if you do and damned if you don't" situations. *shrug* I may feel lonely but seeing the looks of frustration, helplessness, and unease in my friends is even worse. See what I mean?

I think more than anything I'm just screaming inside for someone to just understand. Please just understand who I am, what I am going through, the frustration, the boredom, the loneliness and of course my old friend, the pain. 

My HS Diet

This is the diet I am using to help strengthen my body and fight my disease. I am feeling healthier, looking better and have become active again. Surprisingly the diet is actually quite tasty and I am finding that I am never hungry. How many of us have been on diets only to find that we are always hungry. This time around I'm not and if I do feel hungry I eat.

Anyways it's pretty basic. Since yeast, sugars and grains seem to feed my disease any foods containing those items are out including breads. The exception is brown rice which I eat about once a week. I've been playing with brown rice pastas and they do not cost much more and taste quite yummy. My boys have even started eating it.

Salt, starches and processed foods are out. Have you ever stopped to read the sodium content on packaged foods? Margerine, oils etc no good. Beans are no good for auto immune based diseases and since there is speculation that mine may fall into that category beans are out. Peanuts as well since they are not a nut but a legume.

So what does that leave? A lot actually. 

I can eat meat, fish and seafood as much as I like. 
Fresh/frozen vegetables and fruits are eaten. 
Mushrooms of all types
Raw nuts and seeds are also a daily food item. Raw almonds are actually like candy for me now.
Milk, eggs, cottage cheese and occassionally cheese. 
Honey, raisins, raw cocoa, dark unsweetened chocolate and dates meet my sweet tooth. 
I cook using coconut oil which is actually very good for you or unsalted butter. 
I use olive oil and vinegar for my salads when I want a dressing adding seasonings to my taste. Olive oil is no good for cooking as once it reaches a certain temperature it chemically changes. 
Pickles are allowed.

As you can see there is a lot of foods that I can eat and not only am I allowed to eat them but I can eat as much as I want of each. A typical breakfast might include a few orange slices, 3-4 strawberries, 3-4 dates and some almonds. It's quite filling actually. Veggie stir fries as a side dish to my main meat meal. Also I try and eat my largest meals before mid afternoon.

To drink I am allowed water, milk, teas, and natural fruit juices (not from concentrate!!! but the real thing)

I am thinking of getting some almond flour so I can make pies and cookies that I can actually eat.

Now this diet is giving me everything my body needs and I have energy I haven't had in a long time but I do supplement my diet with vitamins.

Daily suppliments: 
Multivitamin, everyone should take this actually but you don't need me to preach
vitamin C, To help repair cells and fight illness
Vitamin D, To help calcium absorbtion to strengthen bones especially since I'm menopausal also because I am not always able to be outside.
Omega 3-6-9, brain food ;)
Tumeric, for my disease also helps thin the blood and I suffer from clots this has allowed me to stop taking warfarin which is essentially a rat poison used to thin blood
Vitamin B12 - for the nervous system and other things
Probiotic drink - when taking my vitamins I use this to drink them down. It was George's idea and is a welcome addition.
Calcium with magnesium - I'm the age where bone loss is critical to stop I don't want to develop Osteoporosis 

Now add to this all the additional exercise I am doing when I am able to. The walking and basic strength training. Strength training is needed to tighten skin. Since I cannot sweat without breaking out this is done slowly throughout the day 5-10 mins at a time. 

Since I am cooking from scratch a lot the kids and George are becoming healthier. I've taught all three of them how to cook from scratch as well for the days I'm off my feet. I don't make them follow my diet and I have no problem baking a batch of cookies and not eating any. I have been making homemade pizza (dough form scratch) pies, and all kinds of meals. Heck I may even try my hand at making my own pastas. George has been eating more and more fresh fruit, nuts and veggies. It seems he loves that kind of food and is enjoying himself while also becoming healthier. We recently disovered that we are both shrimp fiends so needless to say we are eating much more shellfish.

I've been cooking double batches when I'm able to and freezing half again for the days I am not mobile.

Tonight I am looking forward to a dark chocolate fondu with fruit to dip. mmmmm I never knew diets could taste this good. :P

Tuesday, April 26, 2011


This was originally posted on Facebook but rather than risk getting my account banned there for what some might consider obscene I've moved it here. The original was written April 16th 2010 on Facebook Notes.
I will update my condition in the days to come.


I stated that I would explain my disease for those who wish to know more. This note is me keeping my word BUT it is also a way of getting the information out there. It's a little known and rare disease so the more people who are made aware of it the better.

I am going to divide this note up into four sections. The first will be about the disease and what is known. The second part will be my story. The third section will be links for those who wish to learn more. Finally the last part will be images of the disease with commentary by me.

I recommend that those who have weak stomachs to stop reading right after the third part as the final section will be extremely graphic. Consider your self warned!

This note has not been easy for me to write, please keep this in mind. It may be the bravest or most foolish thing I have ever done. I guess that remains to be seen. It has taken me many years to reach the point where I can be open and honest about what has happened to me. You must understand how embarrassed and worthless this disease makes a person feel. I've had to battle depression and emotional turmoil as well as a great deal of pain.

Having said that it's time to commence...
Part One: The Disease

Hidradenitis suppurativa, or HS as I will call it from this point on is a little known illness that has no cure and no effective treatment. It most commonly affects the underarms, breasts and groin area of a person although it can also manifest itself on the inner thighs, buttocks, stomach, waist, neck and very rarely the top of the head. It is not contagious. You cannot catch HS from a person with the disease. It's almost as if the person's own body is attacking itself.

The disease manifests itself as cysts, abscesses and open wounds in those body areas. Some people may even call them boils. Sometimes as small as a pea but can be as large as a baseball. They are extremely painful and can last anywhere from days to years. Many times they swell to the point that they burst, oozing a foul smelling pus and leaving behind a gaping wound that may take years to close. Cultures of that pus generally come back with nothing found in them. That is one sign that your doctor should be considering HS as a diagnosis. The quicker it is diagnosed the better off a person is. Unfortunately few doctors know of the disease so diagnosis can take years sometimes decades.

Because of the areas the disease affects, many people suffering from HS are to ashamed to tell their doctors or family so instead they suffer in silence until it is impossible to hide anymore. When they do go to a Doctor the disease is often misdiagnosed. My own diagnosis took over 7 years. Most conventional treatments are usually ineffective, temporary and sometimes even harmful. For example I was placed on antibiotics for 5 years but the disease just continued worsening. For those of us who have advanced to stage 3 surgery is currently the only option with large areas of skin removed and either allowed to grow back on it's own or with a skin graft applied. Plastic surgeons with experience in reconstructive surgery are a Godsend but very difficult to find as I have discovered. The disease usually does not return to the area that has regrown but does appear elsewhere. If the wounds is stitched closed the disease often starts forming right on the scar, sometimes before it's even healed!! Carbon dioxide laser surgery is also used as a last resort.

There is a lot of misconceptions about the disease as well so be careful where you get your information from. There is a genetic component in many cases the disease runs in families. It is also found paired with other illnesses such as diabetes, PCOS, Crohn's disease, Rheumatoid Arthritis among a few. HS is NOT caused by poor hygiene. I am probably one of the cleanest people you will ever meet because of this disease. HS is not caused by being overweight although that will aggravate it, many sufferers are thin when the disease develops and gain weight afterwards because of difficulties walking and moving.

HS is often called an 'orphan illness', due to little research being conducted on the disease at this time. Because HS is considered a rare disease, its incidence rate is not well known, but has been estimated as being between 1:24 (4.1%) and 1:600 (0.2%).(quote from Wiki linked below)
The disease has three stages, ( I am a severe stage 3) but for most sufferers it seldom
progresses past stage 2. (copied from

  • Stage 1: Solitary or multiple isolated abscess formation without scarring or sinus tracts. (A few minor sites with rare inflammation; may be mistaken for acne.)

  • Stage 2: Recurrent abscesses, single or multiple widely separated lesions, with sinus tract formation. (Frequent inflammations restrict movement and may require minor surgery such as incision and drainage.

  • Stage 3: Diffuse or broad involvement across a regional area with multiple interconnected sinus tracts and abscesses. (Inflammation of sites to the size of golf balls, or sometimes baseballs; scarring develops, including subcutaneous tracts of infection. Obviously, patients at this stage may be unable to function.)

  • -----------------------------------------
    Flare-ups may be triggered by severe stress, perspiration, hormonal changes (such as monthly cycles in women), humid heat, and clothing friction. Recently many sufferers who I am in support groups with have noticed that certain foods also trigger a flare-up such as sugars, yeast and some grains. I have personally found that in my case processed food of any kind causes a flare.

    The cause of HS is unknown although there are many theories. The disease is poorly studied and those who do study it often disagree about the cause. It is more common in women although men suffer as well. It is not caused by an ingrown hair. Some doctors believe it is a blockage of the sweat gland. Some also tend to agree that it is an auto-immune disease, others a form of acne. Most of it is just guessing at this point.

    That is a good summary of the disease. If you wish to know more please visit the links listed in Section Three.
    Section Two: My story.
    The disease started about 12 years ago around the time I first met George I had developed a small wound on my right breast that was having diffculty healing. Eventually it did heal though so we didn't pay much attention to it. A few months afterwards I was pregnant with Kurtis. We had both agreed that if we were going to have a child we should do it soon as I wasn't getting any younger. During the pregnancy the wound on my breast swelled and reopened.

    I ended up having two surgeries while I was pregnant one under a local since they did not want to induce labour and the other without any freezing. They had tried a few times to freeze it but somehow the area wouldn't freeze so I consented to the surgery without it. George had to leave the hospital as he couldn't stand to be in the room at the time especially when male nurses were used to hold me down. In each surgery they lanced the wound and packed it. For those who do not know packing is a long strip of cotton which is inserted into a wound until no more will fit. This is changed daily by pulling out the old one and putting in a new one. It sounds unpleasant but it really isn't all that bad. It's meant to help soak up the infection and heal the wound from the inside.

    In the meantime, the surgeon tested me for cancer and a few other things but was baffled as to what would be causing the abscess and why it wouldn't heal.

    When Kurtis was born the right breast was still a mess but being the stubborn person I was I decided to breast feed anyways using only one breast. I speak from experience when I say that you only need one to feed a child. As a side effect I was quite lopsided for the 10 months that I nursed him. So much for stubborness eh? The breast eventually healed up again and I thought no more about it.

    A year or so later it started flaring again only this time it was accompanied by another one located in my right armpit. I went to the Doctor who prescribed antibiotics for me. I was to be on these antibiotics for 5 years. The breast flared, burst and drained but the wound would not heal. It was not until a few months ago that it finally closed up. That's more than 10 years with an open wound on my body.

    For the next few years small abscesses would appear and burst under both my arms and both breasts. Never more than one or two at a time and although painful not enough to stop me from working. The doctors still had no idea what was going on or what to do. Six years ago the abscesses started showing up in my groin area. That's when I started missing work. I would go a week at a time having difficulty walking but I'd get through it and go back to work. Thank goodness we owned our own business at the time otherwise I would have been fired for having too many sick days.

    I finally got fed up at not having any answers. My mother-in-law booked me an appointment at a naturopath and I went. Heck I had nothing to loose right? The Naturopath examined most of my wounds and told me point blank that she had no idea what it was BUT would consult with a few people including her own teachers from years before. She told me to come back in a week. When I went back the following week she informed me that I had HS.

    Finally a name for what was going on. I thought fantastic now they can do something about it. No such luck, when I informed my doctor he immediately looked it up, conformed the diagnosis and proceeded to tell me there was NO CURE. That I would spend the rest of my life with this disease. He did however book me an appointment with a dermatologist.

    I continued to see the Naturopath regularily. She couldn't do much for the disease but she was going to do her best to boost my immune system and give me a fighting chance. I went for as long as I could afford to but she was not covered by OHIP and owning your own business means no health plan. I was screwed and forced to rely on my doctor and this new dermatologist. I went to visit the derm who proceeded to prescribe an expensive treatment for Acne using a drug called Accutane. I looked it up. It had limited success with HS and nasty side effects including suicidal tendencies. Most of the side effects were NON reversible so I told him no way. He proceeded to tell me if I didn't take the treatment he was recommending that he would not see me as a patient. That ended that. No way was I going to put my life into his hands, especially not with that attitude.

    The next few years I steadily got worse. So bad that I could walk only a few days out of the month. I've had as many as 37 open wounds on my body at one time. The pain, oh my God I honestly wished I were dead many many times. The pain was the most severe I have ever
    experienced. I cried until there were no more tears. Because of my illness George closed the business. I could no longer work and I was his main technician. Where else would he get a good tech that would work for free? Besides by this time he was working full time, taking care of the house, the kids and me. Often cleaning and dressing my wounds. 

    My doctor tried putting me on birth control pills to regulate my hormones since they have an impact on the disease. Within a few months I had developed a deep vein blood clot in my leg that threatened my life. I was told it could break off and either lodge in my lung or my brain. Either way the results would be nasty with a high probability of ending my life. I was put on Warfarin via needles for a week and then weekly blood tests and the same meds constantly adjusted depending on the test results to keep my blood thin. Regulating my estrogen was no longer an option so the disease continued to progress.

    I was getting worse and worse. I became so depressed and felt so sorry for myself to such an extent that I forgot about everyone else. My life became one endless day after another of feeling sorry for myself when I wasn't screaming in pain. I tried my best to hide it from my children but George knew. I tried to bring some money in the house by crocheting and sculpting and it did help a little but I still felt useless. George was getting worn out. I didn't realize it because I was so centered on myself but I was loosing him. My attitude and the disease were slowly pushing him away and I don't blame him one bit.

    Two years ago my doctor informed me he was leaving general practice. Ouch, now what was I going to do. I needed to be under a doctors care yet there was a doctor shortage. Luckily I had a good friend who was also a doctor. I called him, explained the situation and he took not only me as a patient but George and the kids as well.

    That is when my health began to improve. I gave him my history, told him what the Derm had said. He proceeded to refer me to my angel. The Dermatologist who understood, was gutsy and unafraid to try unconventional methods. He put me on an experimental drug for 1 year and it worked. Well it's not exactly experimental, it's approved for use on men with prostate cancer to help shrink their prostate. There had been one study done where it was used on a few HS patients with favorable results but is still not recommended or generally used for HS. It lessened my wounds and they started healing. Within 6 months I could walk again but I was so weak and very overweight because of the toll the disease had taken on my body and having been unable to walk properly for over 2 years. I was still depressed, pushing people away. I think I was afraid it wouldn't last.

    Anyways 4 months ago I put my foot down and decided that my Derm had given me a chance at a normal life now it was my turn to mend everything that had been broken. I started with myself (read previous notes) then my children and finally I started repairing my relationship with George. It was then that I realized just how close I had came to loosing him. Thankfully, things are good between us now. The household is free of stress, the kids are happier, I'm happier and George has a spring in his step. He smiles and giggles all the time now. He's earned it after all the hell my disease and myself have put him through.

    I've been put on a new diet one that is very strict but doesn't leave me hungry. I am not allowed anything with yeast, no grains, no breads, no starches and NO processed foods. I can however eat as much fruits, vegetables, nuts, seeds and meat as I want. Because of this diet and the experimental drug I can safely say that I am now in remission. I have been pain free for 13 days now.

    It's amazing! I've gone from using morphine, oxy's and pure codeine to using nothing. Wounds that have been open for years are now closed. There is nowhere on my body right now that is open. leaking, swelling or in pain. I've started stretching, weight training and walking. I've dropped 36 pounds in the last 2 1/2 months and continue loosing weight, yet I have all this energy, I'm never hungry and I feel great.

    As I've said before. Life is good.
    Part Three - Links and Random Quotes
    Here are a few links with good information about HS. I've also put a few quotes with the links where the information is located.


    "It has been reported that as many as 80% of HS sufferers are diagnosed as clinically
    depressed. Depression is common amongst people who have to live in chronic pain. It can be
    treated with medication, but to cure the depression completely the reason for the depression
    must be removed. As there is no known cure for HS, this is not possible. "

    "It has been suggested that HS may not be as rare as believed, but that people are hesitant to
    come forward through shame and embarrassment. Also the figures are low through lack of
    accurate diagnosis."

    "Disease may spread to involve less commonly associated sites including the nape of the neck,
    waistband and inner thighs. Anogenital involvement most commonly affects the groin, mons
    pubis, vulva, sides of the scrotum, perineum, buttocks and perianal folds. The abscesses and
    sinus tracts can be painful. "

    "Medical management of hidradenitis suppurativa is difficult. The aim is to catch the disease
    in its early stages and treat and control these milder forms."
    Mayo Clinic - This site is one of the worst for misinformation which is surprising considering it's reputation.

    Cellulitis. This potentially serious bacterial infection appears as an area of swollen, red
    skin that feels hot and tender and that may spread rapidly. Although the initial infection may
    be superficial, it eventually can affect the tissues underlying your skin or spread to your
    lymph nodes and bloodstream.

    Cellulitis is a complication which I have endured. Some of you may remember my time last summer when I was on IV's for over 10 days. This was due to this complication.
    Pictures of others with HS - WARNING GRAPHIC


    Part Four - My Pictures

    This is where this entire thing gets extremely personal. Because of copyright laws etc. the images I will be posting here are my own. These are pictures of me at various stages of the disease. Please keep this in mind. And yes it is as painful as it looks in some cases even worse. 

    Again if you have a weak stomach or are easily embarassed you should stop reading now.

    First the arms.
    Right armpit. This area is about 3 inches square.

    Left armpit. This area is a little smaller than the other arm.

    Now the breast area.

    Left breast underside. You can use my knuckle to get an idea how large this abscess was.
    Underside right breast.
    Top of right breast and the original HS site.
    My right hip

    This was much worse before I took the picture. It's about the size of a looney. At one time it was a hole and I could stick my finger into about a half inch. Now it is only a scar.

    My stomach area.
    The area below my belly button.
    This is my most recent flare up which occurred this past February while George was in Toronto. I was so afraid I would have to return to the hospital and the pain was incredible. You can use my fingertips to gauge the size.
    This is what cellulitis looks like and what I battled last summer.

    My groin area
    The groin area is much worse than pictured here but for obvious reasons I cannot show all the pictures. Lets just say that my labia are heavily affected and when that area flares I wish I were dead.
    This one is about 4 inches long.
    The other side in full flare. This was also around 4 inches long.
    My upper groin. This is not flared but at rest. This is the area that needs to be removed by a plastic surgeon.
    There you go. It's not pretty is it. Now you have a very good idea why I have been so ill. I'm happy to say that most of the above areas have shrunk since this new diet and the reddness is gone. I still have some trouble with my stomach and upper groin area but hopefully the referral I have to a plastic surgeon in Toronto will fix this within the next year. Thanks Aunt Chris without your research I would have never gotten the referral. :)

    It's done. You will never fully understand the courage it took to post these pictures here for the world to see. I only hope that in some small way it helps to heighten the awareness of HS. Please keep in mind that I am now well on the way to recovery and am in remission. I will always have this disease and I know from time to time I will be very ill. I am still facing multiple surgeries and must live with scarring that covers a lot of my physical body now BUT I'm still here, I'm still alive and LIFE IS GOOD :)

    NOTE: I am no longer in remission as of December 2010. For the last two years the disease has been steadily progressing. I am currently doing my best to spread awareness while trying to hold onto hope. - Teri - November 2012