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Hidradenitis suppurativa

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Real members of myHSteam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
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Hobbies

Hobbies

what hobbies do you guys/ladies all have??? what takes your mind off your pain???

A myHSteam Member said:

A hot water bottle. I boil the water to get it extremely hot

posted over 2 years ago

Dressings To Promote Healing

Dressings To Promote Healing

Hi all,
I just got diagnosed but have suspected I have hs for a while. My problem area is my groin. I've picked at any bumps that occur which means I have some open wounds. I don't have the Typical puss, but just lots of red angry skin that's open. Lots of blood/fluid initially came out but is stable now. I'm on oral minocycline and clindamycin ointment. This one area just won't freaking heal, and it's right on the underwear line. Any tips?

A myHSteam Member said:

I have one in the same spot on both sides. I've now decided that women's boxers, or long undies -as my Mom calls them, works best for me. They don't rub and keeps my skin from rubbing as well Great… read more

posted about 1 year ago

Does Anyone Suffer With Boils, Hard Lumps, Spots On Their Inside Lady Parts ?

Does Anyone Suffer With Boils, Hard Lumps, Spots On Their Inside Lady Parts ?

I currently have a lump the size of a grape on the inner part of my lady parts plus two other spots/ poppable breakouts. I know that the large one will not pop it will just come back again. It had been throbbing now for 4 days . I have suffered all my adult life with these ruptures in this area, I just wondered if anyone else does? I take an anti biotic every day but it seems to have stopped working. I can have between 1-5 at once inside and out . They are absolutely killing !

A myHSteam Member said:

I get these to. I have one now that hasn’t fully healed in months every time I wear blue jeans or underwear it gets irritated and flares up. It makes summer time in Alabama miserable 😭

posted 24 days ago

Relationship

Relationship

I know this is probably a weird question... HS has always affected my relationships it’s always a personal problem. I have told two people about some of my issues that are rather unsightly in my underarm. One was totally okay, but the other not so much. I’m just wondering how do you guys deal in relationships? Does it ever get more comfortable or easier?

A myHSteam Member said:

Not easier. I'm ashamed for my husband of 10 years to look at me. Especially when his face is close you know. Also, he got this problem where his balls swelled up bad and it was a side effect of a… read more

posted 10 months ago

For All The Mother’s On Here. Did You Find HS Calmed Through Pregnancy Hormones ?

For All The Mother’s On Here. Did You Find HS Calmed Through Pregnancy Hormones ?

I haven’t become a mother yet and am wondering if this will help my HS, keep it the same or if to expect more flares!

A myHSteam Member said:

Again thank you a helpful perspective. I can tell that we all know hormones plays a huge part!

posted 9 months ago

I Would Like To Know, On Average How Long Is The Healing Time For People Who Have Had Surgery?

I Would Like To Know, On Average How Long Is The Healing Time For People Who Have Had Surgery?

I been suffering for at least 15 years and I feel like I always get the run around. So I went to the doctor the other day and I told him I wanted to have surgery. I kind of felt like he was trying to discourage me. He prescribed me some antibiotics that I got to take for two weeks. Then I go back for a follow up appointment. Any advice on what to tell him in-order to get what I want.

A myHSteam Member said:

Healing after surgery was pretty quick. Mine in in my groin. 5 " of scar in the crease of ea leg. Alot faster than 6 months waiting for a boil to heal.

posted 9 months ago

Has Anyone Had Armpit Surgery?

Has Anyone Had Armpit Surgery?

How was it? And did it help? Pretty nervous about it.

A myHSteam Member said:

I've had several armpit surgeries. I'm allergic to tape and that was the hardest part. My stitches was in for 21 days because it's a hard place to keep closed. It will take some getting used to after… read more

posted over 1 year ago

Anybody Else Not Overweight?

Anybody Else Not Overweight?

I was diagnosed with a severe case of HS last week. I’m on oral doxycycline, topical clindamycin, and an acne wash. However I’m not and never have been a smoker or overweight. I’ve actually spent most of my adult years underweight from an eating disorder. I’m doing better now with the ED as I’ve just had a baby in September. I’m wondeting if the HS onset could be caused by hormonal birth control. I have the kyleena IUD

A myHSteam Member said:

My wife has like you been on so many different treatments and it is so sad n annoying that no doctor out there can explain or give a cure. I hate this HS. I wish I could have it instead of my wife… read more

posted almost 2 years ago

Doc Horror Stories! Anyone Else?

Doc Horror Stories! Anyone Else?

Today my heart was broke. I went to a 'new to me' dermatologist. I had my previous out of state records sent. My journal from my last two flare ups. And was ready to talk business. The doc selected 'Does HS studies/research'... I knew I just had to be in the right place
The 1st nurse was super nice listened, looked, took pics (i have has in my groin, so it is uncomfortable to show people). The PA, looked, heard me say the phrase HS, as I checked my dates on my journal she stood up and said Im… read more

A myHSteam Member said:

@tabithawalton sorry to hear you are having a bad time. Praying for you. Have you ever went Gluten free. It seems to have helped me. I am also on Doxy and metforman.

posted about 1 year ago

Experienced Dermatologist In Upstate New York? Advice? Anything!

Experienced Dermatologist In Upstate New York? Advice? Anything!

Hey everyone,

I'm new to this site but have had HS as long as I can remember. I'm now 34. I haven't been to many docs but am having terrible flare ups again in my upper thigh/ groin area... there must be a doc that can help me with this! Does anyone know of any dermatologists in the upstate New York area, specifically near Rochester, NY... that are familiar with HS?

Also, if anyone can suggest cleansers, lotions, etc to deal with flare ups I'd be so grateful
- I've had this one large… read more

A myHSteam Member said:

Generally when talking about the risks with smoking it's referring to tobacco/ nicotine, yes. As well as the chemicals in the tobacco... not so much the act of smoking/ vaping other substances. Vaping… read more

posted over 1 year ago
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