General chatter - Hidradenitis suppurativa- anyone else have this?




Viviane
08-12-2010, 11:24 AM
So, I'm pretty sure that I have hidradenitis suppurativa (chronic large abscesses on my inner thighs). Does anyone else have this?

I've been keeping the area clean, making sure to shower right after workouts and dry properly (even though, from what I've read, hygiene is not what causes this condition). I don't pop them, but I do use warm compresses so I can to get them to come to a head faster. Sometimes they're so large it hurts to sit. It's painful and embarrassing :o, and now I'm starting to get purplish scaring because I get them in the same spots all the time. I'm just not ready to see a doctor about this yet. This generally goes away/lies dormant when I'm at a healthy weight, so I know the extra hormones, friction, etc. from carrying too much weight has a big impact. If it's still an issue as I get under 180 or so, I'll definitely go see someone because that would be out of the norm for me. I just need help with what to do in the meantime!!

Can anyone recommend an OTC topical that they've used successfully for this? Any other methods of at-home treatment that you use? Help!


goodforme
08-12-2010, 11:34 AM
:hug::hug::hug::hug:

My sister has this. She gets them in her armpits, around her waist, in the folds of her thighs, and under her bra. The only relief she gets is visiting the doctor and having them lanced.

She got a very expensive prescription soap to use (antibacterial? maybe) and antibiotics to take when they get really bad. Her doctor has suggessted surgery but cautioned her that it probably would not make it go away, only lessen the severity.

The only over the counter product she ever used was Boil-Ease (or some spelling thereabouts) that actually numbs the area for a little while, but the nerves are under the abscess, so it's not completely pain free.

Good luck!!

Viviane
08-12-2010, 08:15 PM
Thanks, goodforme, I'll try that! I'm surprised more chicks don't have this problem.


kaplods
08-12-2010, 09:40 PM
I used to get a lot of cysts and boils, especially at my waistband and inner thighs (and almost anywhere that panties cover). The largest though was about the size of a smallish hen's egg. Most were about the size of a marble or smaller.

I went to the dermatologist for an unrelated skin problem, and she suggested using Head and Shoulders shampoo as my only soap (body, hand, and face wash as well as shampoo).

It's helped alot. I almost never get even a pimple anymore (hot weather is the exception, and those have all been in and around the hairline at my forehead and nape of the neck).

I use the equate brand of dandruff shampoo from Walmart (it has to have pyrithione zinc, or zinc pyrithione listed as the active ingredient). There are face and body products you can buy with this ingredient, but they're hard to find and three to four times the price.

I also use zinc oxide if I feel a break out coming on (any kind of skin blemish gets a dab of zinc). You can buy expensive products here also. I do use clear zinc products on my face (unless it's at bedtime) such as Ocean Potion Face 45 clear zinc oxide (it's a sunscreen), but the cheapest and most effective product is zinc oxide diaper rash cream. If you look at zinc oxide creams in the sunscreen and first aid aisle, they have the same ingredients as the diaper rash creams. In fact, it's often the same product (the Walgreen's brand for example is in identically shaped boxes and tubes within the boxes. They even have the same fragrance added - only the printing on the box and tube are different, everything else is the same. I use the Target brand in both the one that is equivalent to Desitin regular, and Desitin creamy. Only $1.49 a tube. The regular is a bit greasy, but it doesn't rub off easily, so I use that at night if I feel a pimple or other skin infection coming on. During the day I use the creamy formula, becaue it's more like a lotion and isn't as greasy. On my face, during the day I use the clear. I also have a prescription steroid cream, for true flares, but if I can prevent the problem with the zinc I do - because steroid creams have side effects with long term use. I try to use the prescription cream as a last resort.

Sounds like a lot of trouble, but it isn't. If you've ever seen My Big Fat Greek Wedding, zinc is my windex, my magic treatment for all skin problems and booboos.

Zinc is an antimicrobial, and it also seems to really help prevent problems in moist areas like skin folds. After I shower, I dry carefully and use the creamy zinc oxide in areas that are prone to problems. I'd buy this stuff by the gallon if I could (which is why I buy the cheapest products I can find). I find that the cheapest is actually usually the best because they seem to add a lighter or less fragrance. I don't want to smell like baby lotion. The cheaper stuff doesn't compete with my cologne.

It also works wonders on dry, cracked itchy feet from summer tennis shoes. It even seems to help soften/prevent calluses (the greasy formula works better, but the creamy formula is more comfortable).

It's worth a shot anyway, but if it doesn't work don't be shy of going to the doctor. You deserve decent healthcare at every size, and abcesses can become dangerous bacterial infections.

saphron
08-19-2011, 02:50 AM
I have had this problem since puberty and since then it has gotten worse. Sometimes it lays dormant for a long time and sometimes its horrible to the point where I'm in pain when I walk. I have just recently discovered that it IS Hidradenitis suppurativa.
Since I have discovered that, I am going to start using self care methods as well as losing weight to reduce symtoms but there is no cure for this skin disease :( If it doesn't get better, I may go to the doctor, but then again, it is super embarrassing, which is probably the reason it has gone on for the last 15 years at least.
I wish I would have known what this was earlier, and it may have been easier for me to go to the doctor.

XLMuffnTop
08-19-2011, 02:00 PM
It's worth a shot anyway, but if it doesn't work don't be shy of going to the doctor. You deserve decent healthcare at every size, and abcesses can become dangerous bacterial infections.

I can attest to this. I had an abscess in a more .. ahem... uncomfortable place that was continually misdiagnosed because it was so deep. It was the most painful experience in my life. I slept in the bath to try to soothe the pain and just writhed in bed in agony. Anyway, it turned to an infection and required surgery and two days in the hospital.

If home remedies don't work, do NOT be embarrassed to seek a doctor. If they don't help, go to another, and another until someone does. I'm pretty passionate about patient advocacy given my families history with doctors.

SeattleSouthBeach
09-29-2011, 04:55 PM
I have had this for years. I also have PCOS. Apparently there are many women with both problems.

I've found that by eating clean, mostly sugar and DAIRY free, my bumps have called down almost to remission. When I lost weight, the bumps were less frequent.

Whenever I get a bump, I immediately call my dermatologist and she gives me a cortisone shot (right into it) which calms it down. Unfortunately, the scar is left behind...but the pain and swelling goes away.

To avoid an infection if for some reason the bump opens (which mine almost never do), I've been prescribed clindamycin gel.

I also did laser hair removal...and I'm not saying it was the reason I rarely get bumps anymore (did a lot of lifestyle changes too) but I saw a benefit to it.

It's a painful (physically and emotionally) disease but it's good to know that you're not alone and there's hope to find something that works for you. There isn't much research about it yet, most likely because it's underreported. Talk to your doctor to try things that may work for you.


Keep trying!

DezziePS
09-30-2011, 12:55 AM
Yes, I have it, too. Here are things that have helped me A LOT:

-quitting smoking. There seems to be a link between smoking and HS outbreaks

-weight loss

-Topical ointment- I use this stuff called "CamphoPheenique" it is sold for bug bites and minor scrapes. It draws the boils to a head, and sometimes, they don't even come to a head, they disappear. It's AMAZING and you can buy it over the counter at any drug store for a few dollars.

-Circumin capsules- this is the active compound in turmeric (the yellow spice). It's fairly cheap (I buy mine on Amazon)and it's an anti-inflammatory. It takes a while to start seeing results, but I take two 500 mg capsules a day and it's working wonders. Took about a month to see a difference. Be sure to get Circumin, not just Turmeric.

-Anti-bacterial soap. Like Dial. Use it everyday.

I'm so sorry you're going through this. I think it is probably WAY under-diagnosed because it's so embarrassing and no one wants to go to the doctor and say, "Hey, would you check out these huge purple boils on my @#&*!!"

Amyct
06-19-2013, 10:36 PM
Please go to a doctor. I've had this disease for 23 years. If I were to have been diagnosed properly in the beginning and had proper treatment I would probably not be fully disabled. I have a friend whose father died as a result of ignoring his symptoms and a secondary infection. I am now taking remicade to help prevent further damage to my body. There are a lot of support groups on Facebook for sufferers of hidradenitis suppurativa. Find one, a lot of us know a lot more than our own doctors. You'll find a lot of help. Good luck to you!

amandie
06-19-2013, 10:49 PM
Amyct- Hi. You responded to a thread that is almost 2 years old and OP has not been on for longer than that so she may not ever see your message just so you know.

BerkshireGrl
06-23-2013, 02:53 AM
It's ok, there are other people reading now that also have it (me) and are thankful for the discussion! :)

Annik
06-23-2013, 05:40 AM
That's an amazing thing about these threads...conversations delivering informative content oleander over again. I don't have hs but certainly learned a lot here

BerkshireGrl
06-23-2013, 01:26 PM
I've noticed with my HS breakouts, which are not as awful as some other peoples, but leave scars like I've been burned with cigarettes on my inner thighs, that they go into remission with a low-carb diet :yay:

I was doing some more reading on the connection, and found this very informative and personal write-up (http://www.primalgirl.com/2012/03/05/primalgirl-opens-up-hidradenitis-suppurativa-part-i/) by Primalgirl, who also found that avoiding certain inflammatory foods was the key for her.