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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latechmami
latechmami
Hi, I've been reading stories for about 3 months now. I have finally decided to write. I have had HS for about 10 years. I am 24 years old and I teach 2nd grade. I have an identical twin sister who also has HS, but not as severe. I have it under my arms, however it has kind of "burnt out" the last year or so. It then jumped to my vaginal/groin area. I would much rather have it in the arms. I'm trying to deal with it as much as I can to get relief. Antibiotics haven't really helped me. I am currently on nothing. I just have a few questions.

1. My vaginal area is swollen about 5x if not more than its normal size. Mainly the "mons pubis" It's very noticeable when I wear pants, it's been this way for a few months. It's always sore, but not painful. It has one or two draining points. It never goes down, does anyone else experience this? Gynecologists never say anything about it during paps, it's just very annoying.

2. My second question is for itching in the vaginal area. The drainage from my groin/thighs is quite a bit. I wear a maxi to help. Without it, it will go through my clothes. At night, I find my vaginal/groin area extremely itchy. What does anyone use/ recommend to put down there to help relieve the itching? I know scratching is not good. Please help with whatever you feel you can help with. Thanks!

3. About a week ago, I started to get them under my breasts :(. I hope it "burns out" in the vaginal/groin area like under my arms"

-Lashonda-
deleted_user
deleted_user
I get them in my groin area & under my breasts too :( It's very frustrating & painful!! I use benadryl for the itching & helps you sleep! You really should start seeing a doctor again, new or old & at least have someone you can go to when you need to have them lanced/drained/flushed. The disease just keeps spreading if not! I stopped taking the antibiotics I was on before because they weren't helping at all...tea tree oil & soaps have seemed to help me a lot. Just keep those areas as dry as you can- I hope baby powder is your best friend! Keep your head up- remember you're not alone! Best wishes-
Danielle.
purpleworld
purpleworld
I wish mine would burn out somewhere-anywhere! I have been itching down below for about 5-6 years. The only way it stops is if I stop scratching for about a week, and clean with wet ones or baby wipes after urinating. straight but it's hard. I tend to scratch in my sleep. There are several hard lumps in that area that just never went down, and they tend to swell and drain in cycles. I'd take them in the armpits rather than the groin any day! It would allow me to be free during intimacy and to be rid of my pants rubbing against cysts when I walk. It's always somethn hurting or draining when i'm out and about.
deleted_user
deleted_user
I was told by my nurse p. that the itching is from over cleansing, which makes sense. She suggested after a shower to use Olive Oil, in the hair area. It is natural and a lot of expensive lotions and cosmetics have Olive oil in them. I also use a product called Triple Cream, in the baby section at WM, near the diaper cream and it helps. Either one has helped me. I just keep the Olive Oil in the bathroom in a little container and just dip my finger in it and wipe it in good, it doesn't take much. Good luck, hope this helps.
deleted_user
deleted_user
I've noticed when i start itching it's time for some "grooming" in that area. I don't shave with a razor, but use an electric shaver ( can get at walmart). I don't shave it smooth just enough to keep it decent. this help relieve some of the friction and heat that goes on down there. Also when I'm draining I use gauze. It helps a lot. Gold Bond powder helps too sometimes. When I'm in the middle of an "episode" I also take time after I shower to air dry this helps the open wounds to scab over a little faster. I've been dealing with that lower area for 12 yrs and have never had the relief of it burning out anywhere. hang in there.
latechmami
latechmami
Thanks for the advice. I don't use baby powder, but I will try it out. The overcleansing seems true because I normally shower before I go to bed, and I notice the itching in my sleep! Thanks for the oil tip and the cream. I'm really glad I have people to help get through this!
Colleenie
Colleenie
Greetings kids. My gyno told me not to use baby powder down there. He said it can cause ovarian cancer. I do not know why. I am using corn starch under my breasts and I think I'm going to start using it on the panty line area. I also use the baby wipes alot, also use witch hazel (rather calming and astringent like) I really flared after using tea tree oil (which suprised me, I thought it would do wonders, however I may try it again????) I don't think being overly clean will cause itching. We just itch because of our condition. Hair follicles plotting and scheming. I use regular antibacterial soap in the shower. Do we want to moisturize, like with olive oil or do we want to be dry?? I am confused. I know the underwear is a constant irritation, tight or not. I sometimes use zinc oxide or antibiotic ointment on the breakout areas. Sometimes I will use a hair dryer to blow the groin area dry, dry, dry. I would not shave in that area as the hair follicles are pissed off enough. After 20 years with this I have no major words of wisdom. I try to leave them (the dreaded bumps and lumps) alone as much as possible. I think poking and proding and pinching can make things worse, at least that has been my experience. Take care everybody. We should have a convention. ha-ha...
deleted_user
deleted_user
Colleenie>well said!! lol...
I use tea tree oil...the very best only, i dab on a cotton 'make' up thingo> *rolls eyes,too lazy to get up and get the right word for it*

even if its not flared, i use daily, im kinda used to it,even if it gets somewhere>very close,instead of the groin area,lol....
i guess the oil in the tea tree helps a lot....and yes i too use the hair dryer>omg>weird,lol...but its very important to keep any 'other' moisture away, then i dab on the tea tree.
Some antibacterial soap free wash can make one itchy, so check the label,or ask at a health shop.:)
deleted_user
deleted_user
Lashonda,
For the boils that have not gone down, i highly recommend that you see a DR and have them drained and injected with a steriod, after he/she will follow you up with an antibiotic, it is very important that you do this! you will definitely feel relieved, i recently posted about a cream that has helped me tremendously - i dont have the name for it but if you search the discussion board you will definitely find it. best of luck & feel better!
purpleworld
purpleworld
Wow, when I had insurance my dermatologist never suggested anything much more than antibiotics and accutane. Some ppl have some really great dr's. who are willing to try different things
happycanuck
happycanuck
Since you symptoms started during puberty, it could be a hormone imbalance. I recommend asking the Dr. to check your hormone levels. My dermatologist had mine tested and found that my androgen (male) hormones were high. I now take spironolactone to lower the hormone levels and for the first time in 25 years I have no lesions.