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 http://en.wikipedia.org/wiki/Hidradenitis_suppurativa)
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
"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.
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.
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