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,...
Ok so I get up today..another day older (35 today..yay..not..lol) and with a lovely new addition to my "monster" count. This time it has chosen a brand new spot, not quite in my left armpit..but close enough. This is a spot where I have not had one pop up, until now. And of all days to choose (yeah I know they don't really choose the spot/date/time to show up) my friggin birthday!
This month alone I have had 6 or 7 come up, got samples for the doc for two of them. I have two in my rear and one in the opening of my you-know-what that just seem to want to stay..they go down, then swell up and drain, go down..again and again..so frustrating. Not to mention I have taken to wearing adult diapers to keep them from completely trashing my clothes.
And last month I had to go through the lovely "drug talk" with the doc..She was concerned that I may be taking too much of my meds. I'm gonna tell you right now that 1 5mg Percocet every 6 hours does NOT cut it when I am in a flare..so I make do with what is given to me..even though when you're doing "pain management" you need to be taking it before you are in severe pain for it to be actual "pain management". So I have started doing this..every time I get one, I call the dr. to see if they can fit me in that day or the next day so they can be documented and so that she can see that I am not full of shit ( she may not be looking at me that way, and it may just be a bit of paranoia and frustration from this disease on my part, most likely it..but it sure makes me feel like she looks at me that way) and that what I'm telling her it is..it really is. I know it is hard for someone who has never had an abscess, much less HS, to understand how horribly painful one is. But from everything I have read in medical journals and info that can be gathered from any regular joe off the internet, it says in plain English (or any other translation) that they are painful and can be extremely painful. So how hard is it for a dr. to get it that, YES, this is a very painful condition. It just is frustrating that most drs. don't understand or believe that it is as painful as it is.
The first one we cultured came back as regular skin bacteria. So that means..what? That there is no antibiotic that can treat this particular spot? I'm still trying to muddle through this explanation as I thought almost all bacteria had some sort of antibiotic that would "kill" it. Looks like I've been pissing money away hand over fist on Hiblicleanse. But I'll keep using it in hopes of keeping away the bigger baddies like Staph and such. Hopefully the second culture of the second spot with be something other than normal skin bacteria..I mean I say hopefully only because I'm hoping we can find some antibiotic that will at least keep some of them at bay..as much as I dislike taking antibiotics.
And the way things are looking right now..it's not going to get easier any time soon. Summer has just kicked into high gear, around here at least, at that always make it harder and makes break outs much more frequent for me. The heat combined with the humidity is just murder out here.
So now I am seriously considering surgery, on my armpit areas at least. I'm not too hot on the idea of someone cutting up and skin grafting/wound vaccing my lady part areas..just much too sensitive.
I'm wishing for some input from those who have had surgery..
1. What kind of surgery did you have...
2. Did you have wound vac or skin grafts or...
3. How was the healing process?
4. Was there a lot of pain involved?
5 If you could do it again, knowing what you know now, would you do it again?
6. Do you think your surgery was a success a failure or does it fall somewhere in between?
Thanks for reading my rant(and bearing with me..lol), thanks for all your support, and thanks to anyone who can help answer any of my questions.
This month alone I have had 6 or 7 come up, got samples for the doc for two of them. I have two in my rear and one in the opening of my you-know-what that just seem to want to stay..they go down, then swell up and drain, go down..again and again..so frustrating. Not to mention I have taken to wearing adult diapers to keep them from completely trashing my clothes.
And last month I had to go through the lovely "drug talk" with the doc..She was concerned that I may be taking too much of my meds. I'm gonna tell you right now that 1 5mg Percocet every 6 hours does NOT cut it when I am in a flare..so I make do with what is given to me..even though when you're doing "pain management" you need to be taking it before you are in severe pain for it to be actual "pain management". So I have started doing this..every time I get one, I call the dr. to see if they can fit me in that day or the next day so they can be documented and so that she can see that I am not full of shit ( she may not be looking at me that way, and it may just be a bit of paranoia and frustration from this disease on my part, most likely it..but it sure makes me feel like she looks at me that way) and that what I'm telling her it is..it really is. I know it is hard for someone who has never had an abscess, much less HS, to understand how horribly painful one is. But from everything I have read in medical journals and info that can be gathered from any regular joe off the internet, it says in plain English (or any other translation) that they are painful and can be extremely painful. So how hard is it for a dr. to get it that, YES, this is a very painful condition. It just is frustrating that most drs. don't understand or believe that it is as painful as it is.
The first one we cultured came back as regular skin bacteria. So that means..what? That there is no antibiotic that can treat this particular spot? I'm still trying to muddle through this explanation as I thought almost all bacteria had some sort of antibiotic that would "kill" it. Looks like I've been pissing money away hand over fist on Hiblicleanse. But I'll keep using it in hopes of keeping away the bigger baddies like Staph and such. Hopefully the second culture of the second spot with be something other than normal skin bacteria..I mean I say hopefully only because I'm hoping we can find some antibiotic that will at least keep some of them at bay..as much as I dislike taking antibiotics.
And the way things are looking right now..it's not going to get easier any time soon. Summer has just kicked into high gear, around here at least, at that always make it harder and makes break outs much more frequent for me. The heat combined with the humidity is just murder out here.
So now I am seriously considering surgery, on my armpit areas at least. I'm not too hot on the idea of someone cutting up and skin grafting/wound vaccing my lady part areas..just much too sensitive.
I'm wishing for some input from those who have had surgery..
1. What kind of surgery did you have...
2. Did you have wound vac or skin grafts or...
3. How was the healing process?
4. Was there a lot of pain involved?
5 If you could do it again, knowing what you know now, would you do it again?
6. Do you think your surgery was a success a failure or does it fall somewhere in between?
Thanks for reading my rant(and bearing with me..lol), thanks for all your support, and thanks to anyone who can help answer any of my questions.
Just wanted to give you my input :)
In 2008 and last month I had debridement surgery to like 7 or 8 places, some worse than others. & yes I had both wound vacs and skin grafts!! (which my wound vacs were stapled to me so when they took the wound vac off it was the most painful thing Ive ever been thru) So yes to answer question # 4 there was a lot a lot of pain & the medicine did not always help.... the healing process wasnt too bad because I had nurses come to my house everyday so I healed pretty quickly.... And to answer #5 obviously would do it again considering ive done it twice already.. Lol. I think my first surgery was a success for the most part, ive had some of them return... & as far as this second surgery goes not sure that it was a success for me in the long run but for now most of my pain is gone! & I would def. have the surgery again, in a heartbeat... no pain is worth the fear of surgery.. atleast not the pain Ive experienced!!! Hope this is what you were looking for :) If you have any other ?s just ask!!
BROSE
Debridement..is that like scraping the skin? How far down does it go?
i had no idea that they staple the wound vac to you! ouch!
With your second surgery..how long did it take before you started having outbreaks again?
Thanks so much for the info. I am seriously considering surgery..but am reluctant because of all the pain I have already been through..and having already had 5 surgeries for other stuff..am not really looking forward to more..but I'm kinda at the end of my rope..antibiotics are not seeming to work..I'm on clyndamiacin right now and just broke out with another monster (the new one in my armpit area)..so I'm severely frustrated, irritated and generally pissed off at my "luck"..lol)
Much love to you Brose
Best of luck :)
2. Did you have wound vac or skin grafts or... I had the wound vac for a week and then home health for a month or better was out of work 3 months, also I did have a skin graft, cant even tell i have had one both hurt pretty bad for me.
3. How was the healing process? 3 months plus took a year and I still have tight skin in neck area
4. Was there a lot of pain involved? yes most days
5 If you could do it again, knowing what you know now, would you do it again? I would cant knock on wood none back in that area
6. Do you think your surgery was a success a failure or does it fall somewhere in between? success, Ia m now wanting to get arm pits under breast done, i am also trying to lose weight to help with the ones I currently have I heard it helps to come degree
I'm running out of antibiotics I can take, since I have started to become allergic to the ones most frequently given for this. So I need to be taking some serious looks at what I can do.
Thanks again everyone for all your input.
I'm gonna keep my appt with the surgeon and see what they have to say, I'm certainly not going to set a date for surgery the day I go see them..I'm still gonna have to think about it a little, especially since my daughter is going next week to have surgery herself for a pilodinal cyst and that itself will need a little time to heal.