Hidradenitis Suppurativa Support Group
Hidradenitis suppurativa (hi-drad-uh-NIE-tis sup-yoo-ruh-TIE-vuh) is rare, long-term skin condition that features small, painful lumps under the skin. The disease manifests as clusters of chronic abscesses or boils, sometimes as large as baseballs, that are extremely painful to the touch and may persist for years with occasional to frequent periods of inflammation,...
The reaction to this disease is incredibly... unpredictable. I feel as if I'm going crazy.
I've had symptoms for about two years... maybe longer, although I didn't put the pieces together. After seeing two different physicians without insurance, I ran into a photo on Google that looked exactly like my symptoms. The hallmark scarring, pitting, and inflamed lesions. It was HS! I moved on to my third physician in September and told her that I suspected HS and said she had thought the same after reading my new patient paperwork. She was a new doctor (sometimes those are the very best because they are thorough and seem to like patients). A more seasoned physician assisted her in my exam. She noted the scarring and prescribed a steroid treatment. I was on my way. I don't even know if I was officially diagnosed. I'm going to have to request my records.
I put this behind me and thought... no way. It's too bad. I don't have that! My sister texted me two days ago and described a golf ball sized abscess on her inner thigh, asking me what it was. I have been in college for six years now - I started out as a nursing student but recently changed my major to psychology. I think she was looking for the standard answer I usually give her from my health sciences knowledge. Well, I had not told anyone. I asked her to text a picture and sure enough, it looks like the beginning of HS. I came clean and even texted her photos of my symptoms. I told my husband yesterday.
The reaction to this is... hurtful I guess. I have lesions bilaterally in my groin area and under my breasts. This week, I developed a new one on my lower abdomen. My denial is out of sight! I still keep thinking it's an ingrown hair! Lol.. I so know better. Now that I am coming to terms with it, it's all I can think about and talk about. But I notice when I told my husband and also a co-worker today (who I am very close with), they seem to think I have some kind of minute acne issue. "Oh - so you are sweating or something?" I brought up some Google photos to show my husband and he didn't even look at them. In addition, I have recurrent subareolar abscesses that I've had numerous operations on. That took seven docs to diagnose!
I know I'm not imagining that this is as bad as it is. I don't know how to get through to anyone that this is not just acne, that it is autoimmune. It's nasty and painful. Of course, I am starting to think anyone with HS has other systemic symptoms. I joined this group tonight because I feel like I need support. Screw psychology - I need a psychologist!
I've had symptoms for about two years... maybe longer, although I didn't put the pieces together. After seeing two different physicians without insurance, I ran into a photo on Google that looked exactly like my symptoms. The hallmark scarring, pitting, and inflamed lesions. It was HS! I moved on to my third physician in September and told her that I suspected HS and said she had thought the same after reading my new patient paperwork. She was a new doctor (sometimes those are the very best because they are thorough and seem to like patients). A more seasoned physician assisted her in my exam. She noted the scarring and prescribed a steroid treatment. I was on my way. I don't even know if I was officially diagnosed. I'm going to have to request my records.
I put this behind me and thought... no way. It's too bad. I don't have that! My sister texted me two days ago and described a golf ball sized abscess on her inner thigh, asking me what it was. I have been in college for six years now - I started out as a nursing student but recently changed my major to psychology. I think she was looking for the standard answer I usually give her from my health sciences knowledge. Well, I had not told anyone. I asked her to text a picture and sure enough, it looks like the beginning of HS. I came clean and even texted her photos of my symptoms. I told my husband yesterday.
The reaction to this is... hurtful I guess. I have lesions bilaterally in my groin area and under my breasts. This week, I developed a new one on my lower abdomen. My denial is out of sight! I still keep thinking it's an ingrown hair! Lol.. I so know better. Now that I am coming to terms with it, it's all I can think about and talk about. But I notice when I told my husband and also a co-worker today (who I am very close with), they seem to think I have some kind of minute acne issue. "Oh - so you are sweating or something?" I brought up some Google photos to show my husband and he didn't even look at them. In addition, I have recurrent subareolar abscesses that I've had numerous operations on. That took seven docs to diagnose!
I know I'm not imagining that this is as bad as it is. I don't know how to get through to anyone that this is not just acne, that it is autoimmune. It's nasty and painful. Of course, I am starting to think anyone with HS has other systemic symptoms. I joined this group tonight because I feel like I need support. Screw psychology - I need a psychologist!
I've had HS since I was 13 and am now 46.
People who haven't had to experience this just don't understand.
I've had suggestions like "just don't wear a bra" or "wear a skirt"....it's both hurtful and insulting but at the same time it's not their fault for the callous advice because they just don't "get" it.
This is a debilitating disease and you cannot be afraid to just say "no, I'm not able to...." when your pain is high.
Do not try to "hide" your pain and push through because the more you do this the less those that surround you will understand how debilitating this is. Pushing through only encourages "it's not THAT bad".
Make a promise to yourself to stop and make yourself as comfortable as you can make yourself even if it means missing a party, a graduation, etc. If you try to push through it may aggravate the abscess and make things worse and last longer.
And, by not "hiding" it the more those around you see just how your quality of life changes because of this and over time will become more aware. Show the actual abscess and inflammation (when able) rather than a photo to those closest to you and encourage them to ask questions. Sometimes is a visual that's needed for someone to comprehend.
I tried for years, even decades to pretend I was fine and came to realize I was only hurting myself. Now, if someone has questions I'll gladly show them all my scars and they "can't imagine" how this feels......if they only knew.
On a side-note, I've recently started washing with Tea Tree Oil liquid soap and had a good run of three weeks but have had higher stress towards the end of my work week last week and here I've been on the couch for the last two days.
Life gets busy (especially this time of year) but key factors to try and have a "normal" existence is to keep stress low, stop and rest when you're tired (we know how exhausting this is), wear comfortable clothing and drink lots of water. And pray. I'm not one for these miracle drugs that cause commercials three to five years from now begin with "if you or someone you love".....I try to find natural ways to cope; Tea Tree Oil, Turmeric/Curcumin; Cinnamon and a triple antibiotic cream with pain relief helps some.
I hope some of what I've shared helps even a little.
I think you are probably quite right that there are some potentially serious systemic effects from HS, due to the role of pathogenic microbes and their toxins. I'm still working on a laundry list of just what all we might expect from them, but it already includes everything from severe inflammation (whether or not an autoimmune or allergic component is genuinely present since inflammation is apparently a typical reaction to infection itself as well as to various microbial toxins) to metabolic disturbances to neurotoxicity.
The prevalence of metabolic syndrome in patients with hidradenitis suppurativa.
http://www.ncbi.nlm.nih.gov/pubmed/24433875
HS probably includes exaggerated pain sensations although I can't name a mechanism offhand whereby that happens, I just have plenty of experience that this "hurts way more than it actually does or should" although I do already know that microbial toxins can operate along some of the same pathways affected by pain relievers.
With all due respect and sympathy to another poster in this thread, I doubt somewhat that Dr. Hamzavi has researched HS more than I have. It's obviously hard to see or treat patients and do that at the same time. I can see where laser surgery might be viewed as a last resort; I cannot see how someone can promise permanent results given the known role of infection in HS.
I do not know how having a laser scalpel waved over you magically guarantees you will never experience another infection in again your lifetime particularly from something that may require the involvement of a major resident of the gut microbiome, and I might even go so far as to suggest that patients receiving this type of treatment compare notes to try and make sure that the sophistication or individualization of any accompanying antibiotic treatment doesn't deserve the bulk of credit for success rather than credit being owed to scalpels, laser or otherwise.
Even doctors are NOT inclined to understand what HS is or is like, nor are they inclined to understand how microbes can even change the rules of health as they are known to doctors, and doctors may also continue to practice naieve scapegoating of lifestyle choices as major contributors to disease when everyone ought to know by now what scapegoating in general is good for (not much).
The odds are probably not good that anyone is going to understand what it's like to have HS. My wife is very much aware of my HS and extremely sympathetic, but often enough still frustratingly oblivious. I'm sure your fellow patients might have lots of understanding what you're going through, though.
Suzette79, I don't know if it will be of any help to you, but one of the earliest papers on successful treatment of HS involving one of my HS Heroes (Dr. Aude Nassif, an affiliate of the Pasteur Institute), concerns a case of HS in conjunction with mastitis, which might be somewhat related to your case?
http://www.researchgate.net/publication/26293521_Is_granulomatous_mastitis_a_localized_form_of_hidradenitis_suppurativa
Cases like this might involve a more atypical bacteriology than other cases of HS, so that may be something to watch out for if a caregiver is attempting a bacteriological assessment.
Some of the other paper about studies involving Dr. Nassif are even more impressive and well worth reading. To my way of thinking, the fact they have been able to achieve complete (albeit temporary) remissions of even advanced cases of HS using only antibiotics is highly suggestive that HS is primarily bacteriological in nature, rather than infection simply being an uncontested complication of HS.
Ertapenem either alone or in various combinations seems to be involved in some of their best efforts, which is not surprising comparing its spectrum of activity against the list of organisms who may be possible perpetuators of HS that have been detected in HS lesions
http://www.ncbi.nlm.nih.gov/pubmed/26565016
http://www.medscape.com/viewarticle/760502
They've also done some remarkably good (albeit limited) bacteriological studies of HS, although I really don't think there's a lot to come of that that wasn't already known about HS previously.
http://www.ncbi.nlm.nih.gov/pubmed/25418454
As far as I'm concerned, no competent physician has any business to declare HS to be non-microbial in origin on the basis of failed antibiotic treatment or on the apparent success of any other treatment. Ignorance of both the finer points of antibiotic use and ignorance of the capabilities of pathogenic microbes may already be more than is usually needed to account for the failure of antibiotic treatment of a disease that no one is disputing involves infection at some stage or other.
Also, you might wish to be careful of the term "autoimmune" as I suspect it is frequently misused (for example in incorrect association with possible aspects of HS like acquired food sensitivities, vegetables from the nightshade family Solanaceae being frequently involved in that).
Anyway, yes - "You just don't understand what this is or what it's like to have" may not be the best thing to say, but I'm certain it's perfectly fair to say, even to doctors, occasionally even other patients. I'm sure even as miserable as I am myself this very moment, I'm already forgetting what it's like to HS as bad as I did. I've been blessed enough to be able to sit and research lately, but I shouldn't forget that just being able use my sore parts for sitting has often been a major achievement in itself for me.
My mother on the other hand is a "There MUST be something that CAN Be DONE." Yeah, hello, I've had it for 35 years now.
My A** is completely messed up and looks like I got run over by a truck. I SO don't look forward to my colonoscopy as it is just Inches from my rectum....My skin is just horrid, irritated, red, itchy etc. I had 38 stitches and a z-flap...
The only thing that helps me, (As I had the "Golfball sized lump in my inner thigh) the second I noticed it, I slathered the daylights out of it with Neosporin.
Shrunk down to nothing in two days.
Only thing I use now. You are not alone.