My Hidradenitis Story

 After 25 or so years of living with hidradenitis I have finally taken the leap and will undergo radical axilla surgery on Thursday, January 11, 2011.

This blog is meant to help folks like me who have been searching for other people’s experience with the disease and treatments.  I will chronicle my surgery and recovery in the hopes that someone else will be able to understand my experience, learn from it, and hopefully it will help them make the right decision for them.

A little background info.  I started with this condition when I was about 13.  It doesn’t start out horrible, just grows that way.  Just a cyst here or there,  occasionally.  Used to think I was just not good at getting clean. I actually thought I was lucky that I got cysts under my arms instead of having acne on my face.  Over the years it just got worse.  But we all thought they were just boils.  My Dad would get them occasionally around his hairline on the back of his neck, at his waist band and under his arms.  But only occasionally, and his never got as bad as mine.  My brother would get them occasionally too.  Same places.  My folks took me to our family doctor for draining stubborn cysts that would not pop on their own using a drawling salv or hot compresses. 

Dermatologists prescribed several antibiotics.  While they helped in the short run, and while it was still not chronic or severe, you can only be on any antibiotic for just so long.   I could put up with just so many yeast infections, and now my body is so used to antibiotics it takes stronger and stronger ones to get rid of minor infections like sinus infections and such.

As I entered my 20’s it really started to get bad.  I remember having to call in sick due to the pain.  I missed appointments while I traveled for a nail care company as a trainer.  It is really hard to be a nail tech and file away at someone’s acrylic nails when you can’t move your arm without crying for the pain.  And I gave up wearing anything that didn’t have a sleeve so no one would see the scars or possible open wounds.

It’s been hard romantically, not wanting to have my shirt off in front of my husband because it has become such a gross mess.  As much as it grosses me out and embarrasses me, I have attached photos of both my underarms to show the severity of the condition and the fact that I have even started to lose mobility in my right arm due to scar tissue.  BEFORE PICTURES.

To learn more about what exactly Hidratenitis Suppurative is CLICK HERE.

So, after much thought and much discussion with my husband, I have decided to have the surgery.  Most of the time they do not do both arms at the same time for patients who are affected in both arms like I am.  Due to the debilitating recovery, they will do one arm at a time so the patient has some mobility.

I am very lucky to have an AMAZING support system that will allow me the time to get both done at once and get it over with. 

To learn about what the surgery is CLICK HERE.

Since they will be removing a large portion of skin from under both arms and healing will be by secondary intention (healing from the inside out) it will take about 4 to 6 weeks for enough skin to grow back to function normally again.  I won’t be completely healed in that time, but enough to pick up Avery again, and work at a normal rate.  If all goes well, I should be back up to par in 3 months.

I will have Armand post here the day of surgery to let everyone know how I do and he will continue to post daily while I am at the hospital.  (they say 3 to 5 days depending upon my pain tolerance level)  If I am able to post after I get home, I will.  If not, my sister Robin, who has amazingly taken a week off of work to take care of me and change my nasty dressings, and take care of Avery as well, will post until I am able to.

I will continue to post pictures, but will keep them as links so those of you who are squeamish about blood and gore don’t have to see if you don’t want to.

So, just to recap.  Surgery will be on Thursday, January 6, 2011.  I will have radical excision of both underarms to remove all the hair bearing and apocrine gland bearing skin and healing will be by secondary intention.  Which is to say that the area that will have the skin removed WILL NOT be stitched or have skin grafted to it.  It will heal on its own.  Growing new skin over a period of time (the body is an amazing thing)

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