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,...
Hi everyone,
I'm new here and I'm really scared, anxious, and freaking out. I have had bumps on my inner thighs for a long time (maybe around age 14) and I'm 23 now. I was always pretty much in denial and was too scared to go to a doctor about it, so I blocked it out of my mind and lived pretty normally. However, I'm 23 now, never been in a relationship because I'm too embarrassed, and it's been weighing on me more and more. I started researching more and came across HS and folliculitis a few days ago. I am going to make an appointment with a dermatologist this week but I'm scared they won't be familiar and won't know what to do. I just really want to get rid of this and start living a normal life again. Ever since I found out about HS and folliculitis, I have just become more worried, anxious, and depressed because I now know how hard it is to get rid of/treat.
I'm wondering if I have staph because I have had sinus problems for the past 5 years too but also haven't gotten that checked out yet. Has anyone heard of someone with HS symptoms that were caused by staph? I get bumps on my inner thighs that sometimes are worse than others. Some are more like pimples that heal, but for the worse ones I normally put a bandaid on and wait till they pop. My thighs have hyperpigmentation scars. I also have these weird patches of thin, wrinkley skin. Does anyone else have these?
I'm in grad school and I only work very part time because it's a lot of work, so I don't have much money either. I haven't told my parents or anyone, and I'm starting to feel very alone in this. I might end up telling my mom because I'm so lonely and getting depressed. For those of you who told your parents, how did you do so? How did they react? My mom is the sweetest, but I'm scared of what she'll think. I know I'll totally break down because I've been so stressed about it, and I don't want her to worry or treat me differently because of this. I just want to be normal and stop having to worry about it/be self-conscious about my scars and stuff.
I'm also worried I won't ever find a guy who will like me and accept this. For as long as I can remember I've always wanted to get married and have kids, and if this gets in the way of that I don't even know why I would keep going. This is a huge fear of mine and one of the main reasons I'm so worried and stressed about this. I'm so down and scared, and I could really use some reassurance and support. Thank you all so much.
I'm new here and I'm really scared, anxious, and freaking out. I have had bumps on my inner thighs for a long time (maybe around age 14) and I'm 23 now. I was always pretty much in denial and was too scared to go to a doctor about it, so I blocked it out of my mind and lived pretty normally. However, I'm 23 now, never been in a relationship because I'm too embarrassed, and it's been weighing on me more and more. I started researching more and came across HS and folliculitis a few days ago. I am going to make an appointment with a dermatologist this week but I'm scared they won't be familiar and won't know what to do. I just really want to get rid of this and start living a normal life again. Ever since I found out about HS and folliculitis, I have just become more worried, anxious, and depressed because I now know how hard it is to get rid of/treat.
I'm wondering if I have staph because I have had sinus problems for the past 5 years too but also haven't gotten that checked out yet. Has anyone heard of someone with HS symptoms that were caused by staph? I get bumps on my inner thighs that sometimes are worse than others. Some are more like pimples that heal, but for the worse ones I normally put a bandaid on and wait till they pop. My thighs have hyperpigmentation scars. I also have these weird patches of thin, wrinkley skin. Does anyone else have these?
I'm in grad school and I only work very part time because it's a lot of work, so I don't have much money either. I haven't told my parents or anyone, and I'm starting to feel very alone in this. I might end up telling my mom because I'm so lonely and getting depressed. For those of you who told your parents, how did you do so? How did they react? My mom is the sweetest, but I'm scared of what she'll think. I know I'll totally break down because I've been so stressed about it, and I don't want her to worry or treat me differently because of this. I just want to be normal and stop having to worry about it/be self-conscious about my scars and stuff.
I'm also worried I won't ever find a guy who will like me and accept this. For as long as I can remember I've always wanted to get married and have kids, and if this gets in the way of that I don't even know why I would keep going. This is a huge fear of mine and one of the main reasons I'm so worried and stressed about this. I'm so down and scared, and I could really use some reassurance and support. Thank you all so much.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4257786
Some things that might be helpful might be for the doctor to not just assume it's MRSA or even Staph. aureus at all, a lot of several other Staph have been found in HS including that one of the best studies I've ever seen of HS bacteriology by the Pasteur Institute workers (see link) finds their Stage 1 cultures dominated by S. lugdunensis which we've barely known for 20 years now and which is still probably often mistaken for Staph. aureus since their outward appearance can be very similar (both are yellow-colored). S. lugdensis is reportedly not known for being hard to kill with antibiotics, so it could be a big mistake to assume it's MRSA.
Also it may be helpful, if it's not to tall of an order, for doctors to be aware of the best antibiotics and the best ways to use them in order to get 100% of the problem bugs and prevent recurrence even without re-infection from an outside source. As much as I admire what the Pasteur Institute has done with HS, I'm not sure if they've ever picked the best antibiotics for that, which makes it harder to tell if they typically ran into any other complications. Even there, they've had a terrible time getting it to stay away once its gone and their particular choices of antibiotics might be one of the more important reasons why.
Also it may be important that doctors don't mistake the "incurable" disease HS for the treatable infections that may show up in it. As much as an HS diagnosis has helped me to learn about HS, it can quickly become baggage if doctors insist stamping "Abandon all hope" on your forehead when they find out you have this "incurable" disease. I am wondering how much more curable the specialist might have thought I was today if he hadn't found out how "incurable" I am.
Both medical literature and patient accounts suggest that HS has been cured before on a number of occasions, which may be more typically earlier when the bacteriology is relatively simple. I always urge people with HS to try to get it looked at as soon as they can, both because the longer it goes on, the more different bacteria may be able to move in (many of them can take advantage of the mess) making it harder to treat, and because things like Staph and Strep aren't things that doctors should turn their backs on given the history of what infections like these have caused.
All the same, it may be true that we are not technically all that contagious, because these are bacteria that are supposed to normally live on everyone already. Obviously it can take more than simply having them on you to cause infection, even if it might be just a small puncture, even too small to otherwise notice.