Hidradenitis Suppurativa Support Group

Hidradenitis suppurativa (hi-drad-uh-NIE-tis sup-yoo-ruh-TIE-vuh) is rare, long-term skin condition that features small, painful lumps under the skin. The disease manifests as clusters of chronic abscesses or boils, sometimes as large as baseballs, that are extremely painful to the touch and may persist for years with occasional to frequent periods of inflammation,...

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Pilonidal Cysts

ShannonA
ShannonA
I was wondering how many, if any, of you have had this. My daughter recently had surgery for this, and so I am wondering, not necessarily if there is a "connection" per se, but wondering how many of us with HS have had them, and how many of you were young (she's 14) when you got this.
I have never had this. I was quite surprised when I looked it up online (although I had heard about them before) to learn that hygiene can play a large part in "acquiring" them, as I have to admit, as a teen, when summer started and there was no school....I was not exactly a girly girl..I was more the tomboy..and would have rather played in a mud puddle than looked at a tub of water..lol..And I've always had long hair and always been a heavy sweater..so as you can tell, when the dr said she had pilonidal cysts..I was like..how? She's a lot "cleaner" than I was at that age..but eh well..I'm rambling now...lol

But yeah was just wondering how many Hs sufferers out there have had these, and are they as stubborn about staying gone as some suggest.
deleted_user
deleted_user
I've never read that hygiene was of the main causes of getting them. I'm sure it doesn't help, but it seems to be more of a collecting of ingrown hairs, bacteria and maybe skin trauma. Having the right genes probably helps it along too.

When I sweat that area gets really wet. I long ago began putting a barrier cream there daily just as a preventive measure. I also do that in the inguinal area and under my breasts if I'm not broken out. I figure keeping sweat aways from my skin and stopping friction in those spots can't hurt. I'm sorry to hear about your daughter. That had to have been a painful procedure.
deleted_user
deleted_user
I was 15 when I had surgery for a pilonidal cyst. I am 43 now and have never had it reoccur. We feel that it was a catalyst for my HS. I have always been heavy and I smoke. The first words out of any Dr's mouth was always, "stop smoking & start by losing 50 pounds." I have seen very little correlation between the HS & my weight or my smoking. In fact when I lost weight I seemed to have more issues, not that I am against losing weight, just saying. To be perfectly honest I have not even noticed a difference in my HS if I shower twice a day or twice a week. For me it seems more hormonally driven. I am almost guaranteed to have a new boil begin when I ovulate then it usually breaks about the time I start.
ShannonA
ShannonA
I think the reason they mention hygiene is because it also said people who are "hairy" (and my daughter has always had this triangular patch of hair that runs from the top of her butt crack up a little ways..we used to kid her and call her our "fuzzy butt baby" lol) that hair can collect there, and, like corkscrew into the skin.(.I swear I need to find the site I saw this on..there is so much conflicting info as to what causes it it really isn't funny. ) So think they're thinking if you keep yourself clean, keep hair from collecting at your butt crack, like does with both me and her..we both have really long hair..then that is supposed to help.
She actually did better with the procedure that I thought she would. Minimal pain meds..a little percocet at first..then nothing but motrin after a couple of days..so I was shocked..but supposedly kids do better than adults so..I just go with each person is different..young or old.
Thanks for the info gals..:D
deleted_user
deleted_user
There is a product called Bikini Zone that is used after hair removal in intimate spots like the inguinal area. That stuff really works well to help keep from getting bumps and ingrown hairs and might work well for your daughter. I don't know if she shaves there or uses a cream depilatory. Either way, it helps keep the skin from getting inflamed and trapping new hairs as they grow out. It might be worth a try.
Colleenie
Colleenie
Shannon, Just spent about an hour looking for info. Mayo Clinic has a good section on the pilonidal cyst. What a drag this is for your daughter. I think hair in the area is an issue here as it pokes back into the skin. Ugh. Give it a look. So much info on it out there, it is overwhelming. I do know I have seen many people here mention that they also have the pilonidal cyst. As far as hygiene being an issue, that is utter ullbay itshay. Take care. Colleen
purpleworld
purpleworld
This was one of my first ones as a preteen-and I had one popup on last Thursday. I was sooo sick, had the shakes, pouring sweat, my whole body ached. I took some Fenugreek on Tuesday and Wednesday and it made some acne erupt. It's known for doing that so i think that was the culprit. Yeah I will be throwing that out now. I started back getting these in 2008 and they abruptly stopped this year. I try to use a clay mask there to dry things out when I feel the itching/soreness. I don't know how else to prevent these.
ShannonA
ShannonA
@catpi- she only shaves her legs and armpits but I will check out that Bikini Zone stuff you mentioned. If it will possibly keep the "hairiness" down in that area for her.
@ Colleene-I agree that the hygiene is bs..I mean look at us..how many of us have had a dr. at one point or another tell us WE weren't keeping clean enough when we knew for sure that wasn't the case.lol
I'll give the Mayo clinic a look see, and you're right, there is TONS of info..maybe too much to a point.
@purpleworld...what kind of clay mask stuff are you using? I mean like what brand or does it really matter on the brand? Are there different kinds of clay masks or are they all pretty much the same.
Thanks everyone for your input..this has been frustrating for me (and I know it has been for my daughter, maybe more so for her than me..but since I;m not exactly in her head and all....lol)
Much love to you all and I pray that you all are experiencing as pain free a day as you possibly can.
purpleworld
purpleworld
I use the Aztec Secret - Bentonite Clay - Indian Healing Clay.

http://www.amazon.com/Aztec-Secret-Bentonite-Indian-Healing/dp/B000VUWU7K

You mix it with water or apple cider vinegar
deleted_user
deleted_user
Yes Shannon, I suffered at your daughters age too. Had it removed and dug out...was bigger than a softball and took about 6 months to heal. I am 28 now and am pretty sure it is back. The pain is horrendous...I feel for your baby girl! I was a nonhairy clean freak @ that age...so, that isn't always the case. I would consult a surgeon if it gets too bad.
deleted_user
deleted_user
@ Shannon-The more I think about it the more I think shaving that area might not be the best move. Shaving really sets up up for bumps. I think I'd go with something like Nair to try and dissolve the hair. It might make the Bikini Zone work better.

Shaving causes issues with curly hairs because when you shave it creates a blunt end to the hair. When the hair is regrowing sometimes that blunt end has a harder time making it from the follicle to the surface of the skin.

I'd talk with the doc and see what he/she says. Maybe laser hair removal would be a good option. Since it's a small area it might not cost too much and will save a lot of pain down the road.
deleted_user
deleted_user
I suffered from this last April when I was 24 and had surgery to remove it. Before the surgery I could hardly walk. I don't even know how I made it through my work days with all the pain. While at home I would just crawl on the floor to get around thats how painful it was. The doctor I went to actually told me that I was suffering from HS, although I have never been technically diagnosed. The doctor said that people assume it has to do with heavier people or being unclean but it really has nothing to do with it. It did take a long time for it to heal and sometimes I still feel some pain when I sit a certain way for a long period of time. I have heard they are very likely to recur and that really scars me. I sympathyze with your daughter. I hope all goes well.
respectful
respectful
I suffer from this also. Since I was 10. It has come and gone over the years, but this one just won't disappear. I am about to have surgery on it. I just haven't decided when. I'm not sure about the "hygeine" thing but it does say that those who sit for long hours at a time are likely to develop them, and that is where I come in. I guess all these office jobs I've had in the past really did me in. Yes, they are quite stubborn, mine burst in 3 places, so I have 3 open wounds 1 on each side and in the middle. It is very painful. I am going to see my surgeon on Wednesday. We'll see what happens.
deleted_user
deleted_user
Hi, I had a pilonidal Sinus when I was 16 (I'm 45 now). I didn't have surgery but it was very problematic until my early 20's. It then disappeared and never returned. Strange! Please read my profile for my history with HS. I hope your daughter is ok now, and wish her well for the future.
purpleworld
purpleworld
Mine did the same thing...until I hit 30 years old then my body changed again-new allergies and all