Diagnosis

From the support groups and general information site i am a member of i see that a significant number of people have found it hard to get a diagnosis from the doctor. Not to mention that after the diagnosis the doctor seems to become less helpful. I know that there is no definitive test for HS and that they have no idea what causes it but i did find information that stated guidelines for diagnosing the disease. Unfortunately when looking at these guidelines, i became more and more angry. I will list them bellow then explain why it is i feel this way, I'm just wondering how many people have been through the same

Anti-biotic after anti-biotic
image taken from Google

experience. 

These guidelines come from Hidradenitis suppurativa: A Clinician's Tool for Early Diagnosis and Treatment. (Under the heading "To make a diagnosis of HS, the patient must have one of the following")

1) An active disease with one or more primary lesions in a designated site (axillae or groin), plus a history of three or more discharging or painful lumps (abscesses) in designated sites since or before puberty.

2) inactive disease with a history of five or more draining or painful abscess-like lumps in designated sites since onset of puberty, in the absence of current primary lesions.

Later on in the same article it lists the key elements to look for when trying to get a diagnosis these are:

•  Typical lesions
•  Distribution of lesions
•  Recurrence of lesions

Now after reading this - and i may be overreacting here- I cant help but question that in my case, why it took 16 friggin years to diagnose me with this disease? and if it had been diagnosed earlier whether or not i would already be in stage 2 out of 3?

I know with HS, most people have been told, that as of now there is no cure and that typically everyone unfortunately gets to stage 3 at some point. But i cant help thinking what if? what if they spent less time testing and retesting for diabetes? Why was it 16 years until they thought that maybe it could be something else? and more to the fact, after i was diagnosed, why was i not given any information? When the doctor told me that he thought i had a condition called Hidradenitis Suppurativa, he loaded google on his computer, that's right, Google. clicked on the first link and printed me off some information. he told me that this should explain and to go to the Library if i needed more? If a doctor had done that in regards to some other ailment there would be hell to pay. but why is it okay for them to do it to me? 

I cannot for the life of me understand why this condition is so under researched. I was told that it is a very rare disease, since looking into it Ive found it really isn't that rare, its just that they have no information about it. The first documented case was in the 1800's its now 2017?? 

What I'm trying to say is why do they think its okay to continually misdiagnose? to continually miss signs & symptoms? to diagnose way too late? and to not have any information to give us? 

I'm sorry that this post may seem like a rant, or me being over dramatic but it frustrates me to no end that we live day after day after to day in pain... and nothing seems to be happening to help..

Thanks for listening

XOXO