Fuck Hidradenitis Suppurativa

I have HS and it sucks The Hidradenitis Suppurativa Trust

[fuck-hs]

I've been on the Rifampicin & Clindamycin for nearly 3 months now, and still have 2 more to go. It's done fuck all so far except give me a near constant fever. Hooray for "flu like" symptoms!

If it was going to have worked, I assume it would have by now so... Fuck this bullshit.

[fuck-hs]

How long am I supposed to be taking Rifampicin and Clindamycin before I notice any effects... If any happen at all? I'm 6 weeks in, and I'm worse than ever. I'm in so much pain I can't move or sit for all the inflammation in my groin. I've even got lesions in both armpits, and I hardly get them there! Plus the side effects are getting me down, something different hits me every day.

I could have sworn the doctor told me it was a 10 week course, but I've still got another 14 weeks worth of tablets left and I'm struggling so hard to see the light at the end of the tunnel

[fuck-hs]

Hey HS buddies! Who here has taken a course of Rifampicin and Clindamycin?

I know that dizziness can be a side effect, but what about excessive sweating? Whenever I have to do anything, I very quickly get dizzy and then start sweating buckets!

[fuck-hs]

Not even a few hours after seeing the derm and old faithful had swollen back up. It's just popped spectacularly and painfully. FML

[fuck-hs]

I saw the derm today. Wonderfully, but also frustratingly, this is the least I've been flared up in a long time! My problem zone has now been closed up for 5 heavenly days.

Based on past treatments, she wanted to put me on ripanficin and clindamycin to see how I get on. So, I'm about to be Kel all up in here!

[fuck-hs]

Still plodding along waiting for my dermatology appointment. I'm now up to 2 lesions that are just refusing to fucking heal! Plus 1 in the crease where butt meets thigh that keeps swelling up and getting angry. I can't walk, can't sit. Getting pretty tired now.

[fuck-hs]

Body hair

What do you all do with your body hair?

I do whatever helps me keep things easy to clean and dress. I shave my pits, but only trim my pubes. I tend to get a rash if I shave my bikini line, not good!

I wouldn't mind trying to wax, but some of the skin has become extra thin and delicate, and I never a have a bump free day! If I were rich I'd probably just get it lasered off tbh.

I was given an at home IPL system to try and it did fuck all. I had the "perfect" combination of pale skin and dark hair and still nada. Glad I didn't shell out for it!

[fuck-hs]

My referral back to dermatology has come through. Obviously I can't have an appointment until November :/

Different doctor this time. Hopefully this one won't half-heartedly tell me to lose weight and there's nothing else they can do for me 🤞

[fuck-hs]

Let's talk sex...

Now, the "how do you tell your partner" topic is pretty worn territory at this point. What I want to talk about is the actual sex! You've discussed your issues with your intended lover and everyone is hopefully still down with gettin' busy! My current flame is the love of my life for many reasons. One of which is that my HS does not phase him at all. Another is that he will happily spend hours with his face buried between my thighs! H E A V E N! So we're getting down and dirty, I'm sitting on his face, we move to change positions and I just freeze. My dressing has half fallen off, I've bled on his face. I start crying, he's very confused, I explain what's happened. Without missing a beat, he jumps up, washes his face and swiftly returns to comfort me. One of my worst fears has come true and it didn't end the world. After I've recovered and redressed, we get right back to it, although I don't let his face back down there just in case.

[fuck-hs]

It's been a while since I posted! What up Tumblr? Until recently, I've not had all that many flare ups... It was good while it lasted! I'm back to the same 5 lesions in my groin. They pop up, almost heal, and then pop up all over again. I've got a troublesome one right on the crease where mons meets thigh. I'm struggling to dress it properly, the secretions keep seeping out and are causing a rash. Super itchy! Anyone out there had something similar?

[ravensmuse]

You know you have HS when an inflamed site opens in the shower and the shower starts to look like the set of a horror movie.

[hs-life]

I’m jealous of all of these people that write posts about going to see their doctor/dermatologist regularly who do try to help them out.

It took me months to build up the courage to go to the hospital to find out what this was, it was humiliating. But I was diagnosed finally! What a relief! I...

[fuck-hs]

It is so fucking tough! I had to fight several doctors, none of them knew what HS was, told me it was my weight, told me to wash more, kept giving me flucloxacillin in an effort to get rid of me. One doctor told me it was ~just my skin~ and I had to just deal with it. I gave up for a while and was miserable. 

to my favourite nurse who had been so understanding about the whole thing and she told me a new doctor had started at the practice who specialised in derm! made an appointment and she was amazing, but my HS wasn't responding to the treatments she was allowed to prescribe so she referred me to a dermatologist.

Now I'm stuck with a derm who doesn't care. my HS isn't bad enough for next stage of treatment. All lesions mysteriously vanish when my next appt rolls around, pretty sure he thinks I'm just lying at this point.  ~just deal with it~ all over again.

I feel ya, boo :'(

[fuck-hs]

I got turned down trying to give blood today. Having to awkwardly describe HS to someone over the phone, and being told they've never heard of it but want to err on the side of caution because of the nature of it. I get it, but I'm super bummed out about it.

[shmeemsy]

my doctor was more concerned about me losing 10 pounds than he was about me having hidradenitis suppurativa 

[fuck-hs]

Ugh, my life 

[fuck-hs]

So... my crotch is always sweaty, not gonna lie. I leave sweat patches on all the chairs, but it never smells.

Since coming off the lymecycline and starting topical dalacin t I've been getting some horrible b.o. stink coming from between my legs. Is that a thing? Or just a coincidence?

[fuck-hs]

I had my dermatology appointment today, what a disappointment. Was told the same old shit I already know: lose weight (that's what started the who,e fucking thing off ugh), wear loose clothing etc etc etc. Then I was told that despite this level of treatment doing shit all to ease my symptoms, my HS is 'too mild' for other forms of treatment.

So basically, just fucking deal with it until it gets worse.

fuck.

[fuck-hs]

Accidentally used my real facebook to make a comment about HS, panicked and deleted. Hope no-one saw it :( #ashamedofbeingashamed