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,...
I am so confused after reading lot of posts about surgery experiences. I went in to see a surgeon about a cyst on my forearm..basically a fatty tumor that I just want removed for cosmetic reasons. While I was there I mentioned having HS because I find it makes it harder for me to heal from surgeries (i.e. c-sections and appendectomy). So we discussed the HS and he recommended surgery. I have stage 3 HS by the way and have been dealing with HS for about 20 years. It started in my groin area but thankfully that went away. But then it started under my left arm pit and after about 2 years, now it's pretty bad in both armpits.
Back to the surgery....I'm a little uneasy because both the surgeon and his nurse make it sound way too simple. He said he's done a lot of HS surgeries and that it's life changing. He said he could do it right in the office if I wanted to do one at a time or could do both at the hospital as an outpatient surgery. He said I could return to work in a week, maybe less. But online I'm reading stories of people being in the hospital two weeks, taking 2-3 months to recover. I know everyone is different and heals differently, has different pain tolerances, etc but the stories are from one extreme to the other and I just don't know what to expect! I have an active 2 year old and a 7 year old and my husband has to be at work way earlier than me so I get them both ready and drop them off every day. My husband could probably go in a little late for a week or so but I'm just wondering if it's reasonable to assume I could get back to our normal routine that soon. I'm not concerned about work. I have short term disability and could use a "break" from my stressful job anyway. Anyway, just wondering if anyone can give me their opinions/experience with the surgery and how long it took to be able to at least get back to daily routines, even if somewhat limited. Thanks!
After considerable research, I'm of the opinion that infection plays a huge role in HS, if not a key role - infection is consistently found in careful studies, infections are capable of causing most if not all HS symptoms, and specific infections may be the only things that most of us might have in common. Given that perspective, I'm less optimistic about the prospects of surgery because I think if antibiotics have failed until surgery becomes an attractive option, there may be infection present that may not fully respond to typical antibiotic treatment, which may create a high risk of infection or re-infection of the area with microbes that may play a significant role in the disease.
All the same, I'm very glad I got the pilonidal cyst surgery and it has held up amazingly well for ten years now, when the prognosis the surgeon gave me was that 50% of the people who get it have to turn right around and get another within a few years. For some of us, the benefits may still outweigh the risk, so it's really largely up to the individual whether they think it's worth it, which is how the surgeon presented it to me.
Other things that might help would be finding a doctor who's particularly careful in choosing antibiotics (believe it or not, a lot of antibiotic failures in HS may still turn out to come from simple mistakes) learning if you have HS triggers - things you're exposed to that can cause flare-ups - and avoid them as possible (some of us although not all flare up in reaction to various foods), or cautiously trying out some of the things that may be helping some of us to reduce inflammation like zinc or turmeric (some literature suggests they may be able to work in the same manner as Humira which has specific anti-inflammatory action).
Some of us can flare in response to stress and may benefit from simple stress reduction / relaxation techniques. Elimination diets seem to be able to help some of us identify HS triggers, while a number of mine I learned the hard way by thinking I might benefit from herbal supplements that "boost immunity". It made sense we might have deficient immunity to have sores that don't heal or take way too long to heal, but it turned out to be not quite that simple in my case.
Having the view of HS that I do where microbes may play a big part, it's possible that taking a few simple precautions to reduce risk of open lesions taking on additional infections may help some cases of HS from escalating. My list is something like if possible, sanitize public toilets before use, try to not to brush my rear up against the walls of the shower, and avoid contact between lesions and bodily fluids. Especially if my lesions are weeping a lot, I might also put down a towel where I sit if it's somewhere that a lot of people have sat, and sometimes explain that it's for own my comfort with HS rather (sometimes it is) than explain it's because of leakage or that it's mainly for my own protection from other people's microbes.
I realize this last part probably isn't much help at all if your problems are mainly in the underarm area. I do also try to wash from top down so that nothing from down there tries to hitch a ride up to somewhere higher on my person. (I don't know if that's the reason - probably not if I have HS on my face - but thankfully I've had very little and almost no HS in the underarms).
It does sound like he is just removing the surface nodules and not the surrounding tissue.
I think it needs more discussion as to exactly what he plans to do for you.