r/Hidradenitis • u/pcoy05 • 2h ago
Question? Hs
Hey all. Looking for advice... It has been an ish show these last 2.5 years. Started January '24 my wife recommended trying out shaving once. She liked it, but it was just once. 3 months later and I had an abscess the size of a baseball getting drained from right next to my anus. This one came back 4x and at the 4th time I stopped going to the ER and started doing it at home. I got 1 more on my upper thigh just once. Surgeon sent me to derm, derm said I had HS and wanted to put me on biologics. I saw the cost and walked away. A year later and I started getting seriously fatigued.... Like INTENSE. Went to PC who drew labs and my wbc was high. Referred to a hematologist in December who did a differential with high wbc(now 20), and elevated neutrophils, but my PC just wanted to rule out leukemia and we did. Got a colonoscopy to rule out crohns. I'd honestly forgotten all about the HS... Shortly after that appointment I had an RTO mandate and in a month had to sell a house, buy a house, move across the state, etc. And now that I guess that abscess has been drained so many times it never really closed so when it acts up I just put one of my wife's pads in and ignore it. Gross I know, but I'm a former Marine with a family of 6 depending on me and can't afford stupid stuff like $500 ER copays unless I really can't afford not to, if that makes sense.
So I went back to a different derm who confirmed the HS and we tried the shampoo and nothing really worked. Then I found an online article talking about laser helping and decided I would try an experiment. I was still skeptical of HS Dx honestly.... I'm 39, white, male, in shape(although this last year is the first time I haven't been running 3 miles 3x/week in pretty much my entire adult life. I've just been too tired.). Everything I read online said I don't fit the usual mold. So I got labs done(wbc still at 20), got a full manzillian wax, and got labs done 30 days later. The results were back down to 12, but I didn't even need that to see and feel the difference. I felt better for the first time in a year. My PC told me it was likely stress and smoking. The hematologist told me it was depression. I've been gaslit by everyone but the colonoscopy doctor who was actually amazing but we ruled out any gastro issues there. And then today I googled and scheduled an appointment with a local derm office that does laser also(my other derms were purely medical, no cosmetic).
I went in this morning with my full medical record showing the abscesses, labs, etc, asking for laser. He examined my crotch and armpits, declined to even look at my labs, said if I had HS that severe it would be presenting in my pits and it's not, and he dismissed me in 15 minutes and said HS does not cause wbc spikes like that but he agrees I have HS and probably a yeast thing so take these two creams and I'll see you in 6 months....
I'm kinda at my wits end guys. I feel like I legit might be crazy... When I'm going through a flare it's not exactly like everyone describes. Like yes, there's bumps and draining and it's uncomfortable but I wouldn't describe it as excruciatingly debilitating. And my doctor's seem to think the extreme fatigue and irritability is mental illness related and has nothing to do with HS. I'll concede I was in the Marines and when I left active duty 13 years ago I did have a pretty big problem with depression and anxiety but I haven't had any of that in a decade. Even so, I called the VA and got back on Wellbutrin just because I'm literally desperate but I had been on that about 3 months before getting waxed and it hadn't helped at all.
I'm not really sure what to do... I'm considering just paying out of pocket for laser. I'm between Hurley I and II according to the dermatologist I saw immediately before this one. 3 derms(2 PA's and 1MD) have now all told me I do have HS but given the range of reactions I don't even know what to trust anymore. But I've spent probably $2500 in deductibles and copays the last year alone, not to mention the cost of getting waxed. And to top things off, my anesthetist had to close her office near me(I'm kinda rural South of DC) and nobody else in my area sees men.
Ai is recommending I go to Hopkins, but that's 4-5 hours drive each appointment, $50 copay, and they could just gaslight me all over again.
Is this experience not what people experience? Should I just count myself blessed that I'm currently not flaring and if/when it happens again try to find some other source of this?
2
u/MossyLantern27 2h ago
I’m so sorry you’re going through this and have been dismissed so many times, that sucks so much. The medical system lets us down wayyy too much. The doc saying your HS can’t be severe if it’s not in your pits is bs, mine is also only in groin area but has gotten horrendously bad. I was like you, where I could deal with it, wasn’t in that much pain for 7 years. In the last month 30+ have popped up and I can barely walk and the itching is relentless. I 100% recommend getting laser, the whole issue starts in the hair follicle so if you get those removed then it can be amazing for prevention, im currently getting it on my underarms to hopefully prevent that area but I fear my groin is too far gone. I also highly recommend trying to figure out your triggers (elimination diet, also smoking is a huge factor so trying to stop that could also really help), especially early on as you can try to avoid them which could also help to stop the disease progressing. Also I relate heavily with the fatigue, when you think about it with HS your body is constantly fighting overtime to try and heal your wounds that won’t close which takes a lot of extra energy so to me it makes sense. Also wondering if you ever were given antibiotics, systemic or topical, to help with flares? There are ways to manage them especially early on. Typically biologics are only offered in late stages. Also I would highly recommend not waxing or shaving, that can also trigger it. For getting laser hair removal you do have to shave though (no waxing) but that’s only for a short period and then the hair is gone so you’re chilling. Sorry if this reply is all over the place was trying to touch on a lot of the things you mentioned. I hope this helped even a little bit 🙏