Ruining my gut flora but doing nothing for my skin
March 29, 2018 10:10 AM   Subscribe

I (strongly suspect I) have hidradenitis suppurativa. I didn't get it treated for more than ten years because of reasons, and now I'm trying to get it treated I can't actually tell if it's worth the misery of the treatment or not. People of MeFi with HS, I would love to hear about your experiences of treating this damn thing. (cw: lots of gross detail)

(If you do not already know what this is, do not do an image search...)

I've had what I suspect is HS since puberty. I tried getting treatment for it once as a teenager, had it diagnosed as folliculitis, took some antibiotics and it went away for a bit but then came back again after maybe six months or so. Until a few weeks ago I hadn't made any other treatment attempts, having had about sixteen years of continuous HS outbreaks. This was partly because of long-term mental health issues that made it nearly impossible to treat lower-priority physical health stuff, partly because my mother told me when I was a teenager that it was my own fault for being dirty and I believed her for too long ('cause you can totally get an immune-related disease of unknown origin from "being dirty", thanks ma).

I saw a GP in January about this and first he prescribed a topical antibiotic, which did nothing, and then a month of lymecycline, which I'm nearly at the end of and which initially gave me a much, much worse HS flare up than usual in some extremely tender locations, and now has settled back down to the same amount of new eruptions as I was experiencing without antibiotics (so basically also nothing). However the lymecycline has, of course, destroyed my digestion, which is really irritating because my IBS was well controlled and my digestive health was good before I started taking this antibiotic.

My understanding from my last conversation with my GP was that we were going to try a month of lymecycline and if it didn't work he'd refer me to a dermatologist. Saw him today and instead he said he intended me to try THREE MONTHS of lymecycline, and then potentially consider switching birth control (which I am super reluctant to do as my current birth control is perfect - doesn't mess with my bipolar mood issues and totally supresses my period, which is great as I find periods pretty dysphoric), and maybe see a dermatologist at some point in the mix but he wasn't super clear on this.

I am really uncomfortable about the idea of another two months of lymecycline (on top of the month I've already been taken it for) given what it's doing to my digestion, and really uncomfortable with the idea of switching birth control given how perfect my current setup is, so I don't feel like I've really got any good options. GP is very junior, not the best communicator, reluctant to give HS as a diagnosis (so still calling it boils/folliculitis in his notes even though we discussed HS last time and he said it did sound like that) and also reluctant to give me a dermatology referral. He's planning to talk about my case with a more senior colleague who has an interest in dermatology to see if they have any more ideas - if this doesn't go anywhere I would consider trying another GP (but only if it's worth treating overall, as discussed more below).

I'd really like a dermatology consultation both for this and for the psoriasis, and I hope I can get one, but it's really hard to get specialist referrals at the moment (this is in the UK/NHS in crisis for bullshit political-ideological reasons imposed by the ruling classes, where the GP is the gatekeeper for all specialist services). I don't think this guy is a particularly good GP but that is true for like 80+% of the GPs I've ever seen, even in different local surgeries and different parts of the country. I have private medical insurance but it doesn't cover pre-existing conditions, which is all of my conditions.

But I'm also concerned about the overall success of HS treatment (via antibiotics or other methods) - from the reading I've done it sounds like treatment doesn't really work for a bunch of folks. I don't smoke. I have lost weight recently and been thinner in the past and it didn't change the severity of the HS. I took lithium for two and a half years, which made it worse (and gave me psoriasis). I've tried washing with antibacterial shower gel, and using magnesium oxide or a hot compress to draw the sores out, and none of those things have had an effect.

I did live with it untreated for about sixteen years, but it's excruciatingly painful and reasonably disfiguring, and I'm increasingly getting under-breast eruptions which make it impossible to wear a bra to my job where I definitely need to wear a bra in order to look professional, which is why I wanted to try getting it treated in the first place.

So: have you been treated for HS? Did it work? Is it worth me trying harder to treat this thing in the context of a reasonably broken healthcare system that is exhausting to grind up against for any length of time? Is it worth continuing the damn lymecycline and pooping my brains out for another two months when there's a chance that no treatment will help with this (or is it worth sticking with it as it might actually start to work in that time)?

Bonus fun/complexity: my parents were medically neglectful when I was growing up and I really struggle with advocating for myself in medical situations, feeling like I deserve medical care etc. And it happens that our healthcare system is messed up enough that I get retraumatised to some extent when my experience of seeking care is inevitably arduous, slow, dismissive or not joined-up/holistic in its approach - I strongly feel based on numerous past interactions with this system that it can't be trusted to keep me safe, to address my actual medical problems or to really effectively manage my overall (reasonably complex) medical situation. I often feel despair about my long-term health prospects based on the feeling that the only healthcare system I have access to can't treat me and I feel like I have been left to figure out a lot of stuff for myself.

I'm also dealing with some childhood-related PTSD-type stuff at the moment, and work is stressful right now - part of me just wants to stop the lymecycline so that I can at least feel digestively settled and let the whole thing drop for a while until my life is less chaotic.

I don't I have good way of assessing whether I should stick with treating this or give up (or give up for a bit and come back to it when I'm more settled), and I don't know what's possible/likely in terms of treatment success. I'm also aware that there's a bunch of emotion tangled up in this which is making it harder for me to think clearly about it. Any perspectives people can share would be very much appreciated.

(sorry that this is a big parenthetical novel about my skin and feelings)
posted by terretu to Health & Fitness (12 answers total) 5 users marked this as a favorite
 
Insist on the referral, if at all possible. If you have psoriasis as well, and you're getting rashes/eruptions under your breasts and in your groin crease, you might have inverse psoriasis instead, and an antibiotic won't do fuckall for it - it's autoimmune, not an infection.
posted by restless_nomad at 11:04 AM on March 29, 2018 [1 favorite]


I'm sorry, this situation really sucks.

I don't have HS, but I dealt with cystic acne for many years, and oral antibiotic courses are generally long-term -- like, at least 3-4 months to see any improvement. I tried courses of minocycline and doxycycline but never lasted more than a month or two because I couldn't handle the GI issues. I can't say whether the tradeoff will be worth it for you, but little or no improvement after a month, or even an initial worsening in the first month, is pretty normal. Antibiotics don't work by killing bacteria causing HS, because that's not what causes HS; they may work by altering your body's immune response or inflammatory response, and that takes several months to kick in. (Unfortunately, it doesn't kick in for everyone, and the GI symptoms are part of that miserable process.)

If the side effects are severe, and it sounds like they are, is there any way of convincing your GP to add topical antibiotics (like clindamycin ointment) to supplement your regimen, or just switching from oral to topical? Clindamycin/hydrogen peroxide gel made a huge difference for my skin -- it's the only thing that ever helped -- and there is some research suggesting it works for HS too. I'm not sure if your GP will prescribe that, but if you can't get a derm referral, maybe your GP would be willing to try?

Finding someone who actually knew how to fix my skin took nearly twenty years, and even then it was a process because I have self-advocacy and avoidance issues around doctor things, but it really did help my overall physical and mental wellbeing when it got sorted. I really feel like I lucked into eventually finding a GP who had also struggled with cystic acne and took me seriously -- I definitely didn't have the wherewithal or energy to manage finding someone on my own. But trying to work on this might actually help some with the childhood stuff? (It did for me.)

Also, not sure if you smoke cigarettes, but that's definitely known to worsen HS; it's another stressor, unfortunately, but if you do smoke, quitting could help (Although that can, paradoxically, worsen GI stuff. Bodies: they are complicated.)
posted by halation at 11:06 AM on March 29, 2018


Shame and despair are definitely words I have used in the past to describe my feelings about HS. It's kind of the worst, isn't it? So adjacent to dirty/unclean (although this is false), and not really 'bad enough' to feel like you warrant treatment or care for it.

About my HS: I'm in the US but my treatment in the 90s and early 2000s involved going to urgent care for each flare up, and getting a regular course of antiobiotics and usually they'd lance the really inflamed/painful ones (so, basically all of them). I would say that in my early twenties they began in my armpits and then as I got older, moved to my groin. At one point I had out-patient surgery that removed a particularly recurrent patch of tissue in my groin, which was successful in stopping further HS flares in that area. I continued to get them along my bikini line, but the frequency seemed to diminish as I got older. I would say I had maybe one or two every year from my late twenties to early thirties, and now that I'm in my mid-thirties, maybe one every two years. It didn't seem to matter whether I smoked, how much I weighed, what I ate, what birth control I was on, or how active/sweaty I was. The only things that made a difference were aging and, for a while, waxing my bikini line*. Also scalding hot compresses the minute I noticed a potential lump and NOT PICKING/SQUEEZING.

About your HS: reading your scenario, I think--you can continue to attempt treatment, or take a break. Your third to last paragraph really struck me--my parents weren't medically neglectful, and I still was overcome with shame and despair and humiliation in trying to find adequate treatment for HS. Hell, I feel this way now when I have a flare up, and I've been in therapy for years and know, objectively, that this medical condition is not an indictment of my value as a living human being, but man are those feelings strong and powerful. In your situation, I think I might tell my GP that I want some time (maybe a month?) to think about it, and in the meantime see if you can get a dermatology consult. It seems like some research is indicating that HS is actually an autoimmune condition, and there are other treatments than continued antiobiotic use (which I would be opposed to, as well, and which I actually don't think helps the root cause--it just treats the infection that develops when flare-ups occur. Looks like research supports this too). You might also try to find online support groups or forums that might have leads on specific doctors or treatments, or more specific advice--there are some links here that might be useful. Do whatever you need to, for now--you're already doing a great job advocating for yourself and there is hope.

*I don't think this is, like, medically indicated, and I'm sure YMMReallyV, but for me I think it helped for a while. Honestly my aesthetician seemed more familiar with it than various doctors had, and I always kinda felt like removing the hair from the root made more room under the skin for the sweat glands or something, although I know that's totally not how it works. It probably just made me feel like I was trying something that might help.
posted by stellaluna at 11:17 AM on March 29, 2018 [2 favorites]


It sounds like it's going to be difficult to do, but push to see a dermatologist, or at least get the ball rolling on that referral. Only a dermatologist will have the clinical expertise and tools to figure out what's going to work here, rather than just throwing antibiotics at it and then start changing your other medications. I've been seeing a dermatologist for years and it still took months of trial and error to confirm what I had (not the same as you have, but something that did turn out to be a bit of a zebra diagnosis) and how best to treat it, especially since I also had more than one thing going on. Definitely try to move toward that as soon as you can. I'm sorry you have to deal with a gatekeeper GP on this!
posted by limeonaire at 11:26 AM on March 29, 2018


Would wearing a Breast Nest be a good bra substitute? It's not the most supportive garment but it's praised for being very comfortable and soft, and it prevents skin-to-skin contact and absorbing/wicking moisture from between ribcage and breasts. If you're able to get several of them, you can wash them between every wear, which might help minimize further skin irritation.
posted by pseudostrabismus at 11:38 AM on March 29, 2018


I don’t know if you’re taking a probiotic to restore your gut flora, but regardless of the direction of your treatment, I think this would be beneficial.
posted by Autumnheart at 12:06 PM on March 29, 2018


You say that your GP is "reluctant" to refer you to a specialist. How far can you push him toward "this patient is annoying enough that I'll refer them"? Be firm that you CAN'T tolerate two more months of antiobiotics due to the side effects and you WON'T change birth control medications because you finally found one that works with your other intersecting issues. Take those two options off the table and say, "what other treatment options can you offer me?" If they don't give you other acceptable alternatives, then say, "Since you can't treat my condition, will you refer me to a specialist who might know about other treatments?"

Caveat: I have no experience with the UK medical system. But I'm fairly decent at being passive-aggressively aggressive with bureaucracy.

And +1 on trying a probiotic in conjunction with anything else you do/don't do. I lived with random recurring stomach pain for years, sometimes worse and sometimes better; during a particularly worse spell I finally saw my doctor, who suggested VSL #3. That particular probiotic works well for people for IBS, and it definitely worked wonders for my probable-gut-flora-imbalance.
posted by serelliya at 12:22 PM on March 29, 2018


I don’t have your same skin issue but for some years I’ve had blisters on and off and I believe I’ve had much fewer since I stopped taking ibuprofen. My dermatologist doesn’t think it was an issue but I’m going to keep on not taking ibuprofen.
posted by catspajammies at 12:24 PM on March 29, 2018


I grew up somewhat medically neglected, too, and have struggled in the past with HS as part of PCOS (great article with some suggestions here). In my experience, it's connected to hormonal imbalances and excess androgens. It could very well be that your birth control might be switched around to better control your hormones. At the same time, I totally understand not wanting to change that for mental health reasons. Hope you're feeling better soon.
posted by jhope71 at 12:26 PM on March 29, 2018


Agreed that whatever you do, take a strong probiotic. I take VSL #3 that my dr orders so my pharmacy will stock it. When I was restoring my gut it was 2/day. Now it’s 1. Also you can try Align and others. You may feel some bloating for a couple weeks. If over a month or so it doesn’t improve then try a different one
(Anything but VSL upset my stomach.) I have also talked about peppermint capsules which have extremely helped my IBS.

I also highly suggest seeing a therapist to help with all this. Illness is fucking stressful. I found one that believed me about my illness and helped me sort a lot out.

To advocate bring notes and possibly a friend. I’ve also answered some asks about health advocacy.
posted by Crystalinne at 1:48 PM on March 29, 2018


I have/had HS. My armpits and groin have the scars to prove it. I absolutely know the difference between HS and "just boils" and have had it medically diagnosed. A few things have really helped me, to the point that I haven't had flares in my pits for years, and get only a couple a year in my groin. They sound like "boil treatments" but I swear it helped.

1) stopped shaving my armpits and instead switched to an epilator (just got this one, it is so great!). it hurts a bit, but the eruptions hurt way more.
2) started changing my panties AT LEAST twice a day to keep the moisture down and if there were any oozing eruptions, get that goo outta there.
3) moved to a much less humid environment (not really plausible i know, but it helped!)
4) started wearing these moisture wicking things when i would be working an event or otherwise getting super sweaty in my crotchal area. i would put one in the crease between my stomach and mound. i think they would also work really well under your bra. bonus, will absorb any oozing goo.
5) i do have some mupirocin that i use on the eruptions if they do happen.

i hope any of this might be useful. i know how much this shit hurts, and i know how embarrassing it is worrying that someone might see it.
posted by misanthropicsarah at 2:36 PM on March 29, 2018 [1 favorite]


Did you know that HS is one of the blood disorders that qualifies you for disability? My wife has suffered with it since her teens. It started to interfere with her job when she would have particularly bad flare ups. She filed for disability benefits on her own, and was approved on the first filing. She can stop benefits and return to work at any time, she has twice already. But, it's good to know that her benefits are reinstated as soon as she can no longer work.
posted by widowsson295 at 12:07 AM on March 30, 2018


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