Hidradenitis Suppurativa Support Group

My name is Autumn. I was diagnosed with HS when I was about 13, and I was shocked to find that it wasn't at all my fault. My mom knew about it, and I complained of the pain and discomfort constantly, but my mom insisted that it was because of poor personal hygiene up until we first saw a dermatologist. I'd been noticing the painful bumps since about 5th grade, right before I hit puberty and then all hell broke loose. Over the next four years or so, the bumps got bigger and drained more and became more painful and deep. I eventually stopped trying to find ways to get the blood off my clothes, because I realized it was completely pointless. My mom stopped judging me the minute she found out it was an incurable genetic disease and tried to be sympathetic and get me professional medical help. I took antibiotics for about three months, but my body stopped responding after that point, so I stopped taking them. I have no medical insurance whatsoever, I work a relatively average hourly job and barely make ends meet, so I can't afford insurance anyway, and other than the antibiotics I have not had any medical assistance, treatment, or medication of any kind for the last 8 years.

I am DYING.

The pain is unbearable. I can't walk, I can't exercise, I can't sleep sometimes because no matter which way I lay, I'm hitting something painful. I've had swellings up to the size of baseballs at times, and now it has begun to spread. I can't tell you how hard I cried when I realized it was spreading to my breasts. This sounds kind of strange, but that was one of the only parts of my body that was untouched by this disease, and now I'm embarrassed to wear a tank top because the scars are inching up my chest.

Sometimes, I look down in the shower and I see blood running down my legs or my torso and I can't even tell where it's coming from. I am so, so, so fed up with this disease. The depression eats at me every day, and I have to fight to remind myself that I'm still beautiful even though the one body I was given continues to let me down. I'm so lost and overcome with sadness on a daily basis; every time I feel that twinge when I move, the emotional pain is worse than the physical most of the time.

So...I could use some love, advice, support, anything, from people who know and understand what I'm going through and I will do my best to love and support you all in return.

OMGoodness Autumnamber, that is just so sad and awful that you have had to go so long without medical care! I know how that is too, as I went for almost 20 years without any treatment other than the Tetracycline that was prescribed by the one and only dr. I ever saw for it and who diagnosed me the first time he saw me. Of course it was the last time he saw me too, since I had no ins. plus the fact that he had not a clue what to do other than prescribe a useles antibiotic.

I was thankfully able to have surgery in 2000 due to the fact that I live in Oregon and qualified for the Oregon Health Plan. It didn't cover HS surgery the first time my dr. turned it in, buthe called me later and said he got it covered and sent me to a surgeon friend of his. I always suspected that they either fudged on what the surgery was, or that his friend did it free gratis as a favor to my dr. I didn't ask and they didn't say. I am just grateful, whichever!

I wish I had some kind of miracle to offere you, but all I can do is give you my sympathy and ask what kinds of home treatments you have at hand. I you explore the Medicine and Treatment Forum here, there are tons of suggestions and things that we do to help keep flares at bay. I am worried that your's is so advanced that it may be hard to do much on your own. But...that said, there are always things that can make it easier to handle day to day,.

And at least you can come here to talk to others who know what you are going through. The helps me so much it is amazing.

Welcome to our little family and hope you find some comfort here and some tips to lessen your pain.

Karen

Autmn, do you have a free clinic around you. And most hospitals have charity care for those that are uninsured. And whatever meds you may need, you can get help through PPRX or something equivelent to it. But most of all file a claim with Social Security. My spouse is the one with the HS, and is a VET so we have had the insurance and all the documentation for him to proceed without delays. So having no medical backup it may take a little longer for you because they will make you see a bunch of drs. But help down the road is better then none at all. I know it doesnt help you now but this is a horrible disease and it doesnt get any better. He has gone through the antibodiocs phase, steroids, remicade, even radiation to try and get rid of this. But now that we have found Dr. Hazen in Westlake Oh this CO2 surgery is getting rid of the disease. It may hurt like heck right now and he has a lot of procedures to go because his HS covers his entire left butt check, part of his right cheek and his entire front groin. Both of his daughters have the disease but not to the extent he has. But i know how his has progressed and it seems the older you get the worse it gets. What works for someone else may or may not work for you. But just know this , we all know what your going through, and were always here for you to vent. So heres a big hug, and hang on !!!!

Just remember that you're NEVER alone! All of us here know exactly how you feel! Right this second I have TWO flare-ups bigger than a baseball on my inner thighs. I am sitting on a spare piece of open cell foam to try to reduce the pain of sitting. Whenever you twitch in pain, remember you've got an entire support group here for you!

Thanks to everyone for the kind words...I didn't ever think that I would get this much support, I feel so much relief that I've found people who understand what I'm going through. I've been lucky the last few days, no flare-ups and no bleeders, but I know with the hot weather coming I've got a few months of hell to look forward to....at least I know now I have you all here to have my back when I hurt the most. Thank you so much for all your support and kind words!!! They mean the world to me.

Autumn, I also wanted to recommend simply going to the ER. They will bill you & not make you pay up front, so you can get urgent care for your lesions & pay the bill back at a rate that works best for your budget.

We all know what you are going through & just want to commend you for joining our family to get some support- that is exactly what we do here! If you have any questions, or just need to vent (trust me, we all do!) than you have come to the right place! Please do not hesitate to ask us for anything!

So, where do you live? I know exactly what you mean about the warmer months coming- because I live in Oklahoma and it gets really hot & humid here...ugh. Hang in there & we can offer you all the advice & support that you will listen to. <3 Candace

<<<-----< Us beside ourselves with excitement, celebrating Autumn's days with no flares and no bleeding!!!!

Candace, I live in North Carolina... Summers here are brutal on my HS, and that's when a cyst on my tailbone tends to surface as well because of the intense heat and increased sweat . ugh is right!! I definitely think the next time I have a serious lesion I will go to the hospital and see if I can get some treatment.... Do you think they will treat me for existing cysts or if they might give me treatment options for prevention? Just a guess from any experience you have... I'm terrified to be in debt but I can't afford my company's health care right now.

And thank you oregonnative!! I felt almost no pain today, it was definitely a good day HS-wise.

How nice to meet a N. Carolinian! My hubby, know as Bear on MDJ was born and raised in Hickory. Are you familiar with the area? He was actually born in the country at home and the area was known as Punkin Center back then. It was just a crossroads with a store on the corner. lol Now it is part of Hickory.

Was wondering about the cyst. Is it called a pilonidal cyst. Those seem fairly common among some HSers.

I have never been given any suggestions from my dr. on preventative options. I am not aware of anyone who has really gotten any reliable info on that from a dr. If so I hope they jump in her and correct me. Home remedies that we have discussed here and have in the Medicine & Treatments Forum is all I know about.. I do know of people here talking about such things and saying it never works, but that is all.

Seems our home treatments work better than any meds the drs. hand out.

With the exception of antibiotics for secondary infections that cause the abcesses, large and small.

And I know what you mean about being afraid to be in debt. I was the same way, but I finally had to go to the er one time with chest pains. I told them up front that I had no insurance and not much money but that I could maybe pay $10.00 a month until it was paid off. They agreed and that's what I did. Took me 4 years almost but I paid it all. Also paid the heart specialist the same way. So give it a try, ok? They can't get blood out of a turnip and most hospitals just want to know you will do the best you can and that you really want to have a payment plan, no matter how small.

most hospitals have charity care where you dont pay for anything for the ER.