Hello and welcome to my tale of HS - Hidradenitis Suppurativa

Hello and welcome to my tale of HS - Hidradenitis Suppurativa

My name is Robyn and I am 43 years old and was diagnosed with HS when I was 21 years old and this is my tale of living with HS.

I was luckier than most in sense only because my general doctor knew right away what I had.  He knew about HS but didn't have much experience with it.  So he put me on the normal antibiotics and they worked wonders for about 6 years until my body became immune to them.  But I was also luckier than most that I was not really inflected much in my younger years.  Nor have I been inflected in the groin, thigh or breast areas.  And up until I reached 40 years old, I had minor breakouts and I was able to manage them as well as the pain to still live a normal productive life.  But my HS has become unbearable as I hit my 40's and has been running rampant on my armpits but mainly my left armpit.  My latest bout with HS has been the worse I have ever experienced and the longest.  I have been inflected for 2 months now with a very bad outbreak under my left armpit.  I went to my general physician after my outbreak not coming to a head to drain in over a week and as usual for the last 10 years, she drained it and as usual I leave the doctor’s office in tears and shaken to the core from the shear pain.  I feel so bad for my poor doctor who doesn't like having to do this to me anymore then I like having it done and she just keeps apologizing to me.  So know she sends me off to the same surgeon I met 5 years earlier to see if I am a candidate for the radical wide excision surgery and I am not nervous at all and thinking it's the same old same old routine I have done over and over the last 20 years  but shit!  I am now at Stage 3 of HS and a radical wide excisional surgery candidate!  WTF HS!!  So I leave the surgeons office in tears and sheer panic as well as scarred more than I have ever been in my life.  

After about a day and the initial shock wore off and I my husband is off to work, I am alone and confusion, anger, depression and so many other emotions stirred up inside of me and I began to weep hysterically.  Then I pulled up my big girl panties and wanted to know more before I decided on having this RADICAL surgery.  That is why I have finally decided to come out of the closet with my HS and why I have decided to write my blog in hopes to help other's whom are inflected with this horribly painful and embarrassing disease.  When I researched the internet for answers to my many questions that I forgot to ask the doctor, out of sheer panic.  As well as statistics or what to expect the weeks and years after the surgery, I couldn't find out much on the surgery other than some pretty gross images online that set me into hysterics again.  Then one day after feeling hopeless which one with HS feels a lot, my wonderful mother-in-law came across Tracy's blog; Overcoming Hidradenitis Suppurativa (HS) and in Tracy's blog she gave a wonderful explanation of what to expect for the day, weeks, and years after the surgery and now I feel I am ready to move forward with the surgery.

I don't want to assume because you are reading this blog that you know all about HS so that is why I am going to give a little background on HS before signing off this post.  The non-contagious disease manifests as clusters of chronic abscesses, epidermoid cysts, sebaceous cysts, pilonidal cyst or multilocalised infections, which can be as large as baseballs or as small as a pea. It can also start as a single abscess and once it pops, can make tracts of many more abscesses. These cysts can be extremely painful to the touch and may persist for years with occasional to frequent periods of inflammation, culminating in incision and drainage of pus, often leaving open wounds that will not heal. For unknown reasons, people with Hidradenitis develop plugging or clogging of their apocrine glands.  HS causes chronic scarring and pus formation of the underarms (axilla) and groin/inner thigh areas. The simple procedure of incision and drainage provides some relief from severe, often debilitating, pressure and pain. [1]  Scientists say a variety of genetic and environmental factors cause HS [2] and there is three stages to HS with varying treatments.  HS can also lead to depression, cancer, arthritis, restricted limb mobility from scarring, local or systemic infection resulting from the spread of microorganisms and so on.  

Most physician are unaware of HS and most of the time is miss diagnosed and coupled with the "shame" and "embarrassment" factor of this disorder keeping most persons inflected with HS from going to see a doctor there has been very little research on HS which has caused HS to be labeled a rare disorder when in fact according to Hidradenitis Suppurativa Foundation, Inc., HS appears to indiscriminately affect the global population, and can be found in many countries, affecting many different cultures.[3]  And in the US it is estimated that approximately one in every 100 people lives with HS.[4] It all comes down to money in the end because the government and drug companies won't give you research monies unless they can make their money and since the inflected stats are so low, no monies for research.  Not to mention I just found out that private practice doctors lose money on helping an HS patient because the medical insurance companies don't cover all the is involved in the radical surgery procedure so that doesn't help the cause either.  

So if my coming out of the closet with my HS helps just one person who is going through what I am, or someone who loves as HS patient or raises more HS awareness for research, then it will be worth it.

References:

[1] From Wikipedia, the free encyclopedia, Hidradenitis suppurativa
[2] & [4] Discovery Fit & Health; Hidradenitis Suppurativa Explained
[3] HSF: Hidradenitis Suppurativa Foundation, Inc. The Prevalence of HS