Hello, my name is Patricia... very nice to meet you btw. As for my story, i was diagnose in 2013 but have been suffering for longer since no doctor couldn't tell me what Im suffering from. This condition totally sucks!! It has change me inside and out, Im not the same as I use to be, i dont go out anymore, I just want stay home by myself since Im always in constant pain... I not able to move that much due to the scar tissue. I've isolated myself from also everyone, I dont have family near me... they all reside in different states and that makes it worse! But i have to remain strong and keep on working since im a single parent It feels good when you meet someone that truly knows what your going thru. Keep in touch, God Bless!!.

Hi I just joined too. I have also had it for 12 or 13 years. It was embarrassing and I cut off relationships because of it. Finally was diagnosed last year or the year before. By then I had multiple stage three sores. I had to have a very painful surgery. Antibiotics don't help. My physician said that my only option is surgery. Healing and trying to function for my young kids healing from these is just HELL. I have read a lot about HS being an auto immune response. I tried an elimination diet. I found that if I cut out nightshades the flare-ups are ALMOST gone. This was devastating as well. I have been a vegetarian for years. I was eating a ton of tomatoes, potatoes, eggplants and peppers. I still have breakouts. One of the sores that they cut out of me is back. It is deep in my vulva. It has never opened on it's own. It makes sex very painful. Sex also makes this sore bigger. I wish my husband would even try and understand. He is selfish and mad that he isn't getting any. It is putting a MAJOR strain on my marriage. It is not our only problem but it sure doesn't help. He gets angry with me and tells me to go to the doctor. All the doctor will do is cut it out of me. My insurance is no help and I just finished paying off the last bill from this. I feel like I am rambling... Having a bad morning and have never posted or seeked support for this disease.

Hi...I agree with sadpanda, I have the same issue with my inner and outer labia/vulva/buttocks/and groin. I am a stage 3, and have had it since the age of 10. It's been 35 years now...and well, I'm sick of it.
I can't even pee without a towel held against my labia....it burns like fire from the open wounds. Thankfully, my husband is my ROCK and feels my pain. We've been married 20 years now....He is the one who dresses my wounds in the morning before work. I told him he's in the wrong profession and should be a surgeon. :)
It's pretty hard for me to travel more than an hour at a time, or sit for very long, so I need to get up and move around.
I find it difficult to go to the beach...even though I love going into the water, I usually just wear my shorts and go up to my knees. It's more of a pain to change in and out of a bathing suit with leaking wounds. I prefer the comfort of covering them, it makes the thick scar tissue on my tailbone buttock region less painful to bear, I had a z-flap and 38 stitches....unfortunately though there is still an open wound that never closed just inches from my rectum, which god forbid I am constipated, will make it bleed like I was murdered.
Scary. the things we have to deal with....it just makes me crazy sometimes. Welcome to the group...you are not alone.

I'm 23 and I've had it since I was 16. I quit school due to children bullying me over this condition. You're not alone at all. I'm also stage 3 with spots in every imaginable area you can get them. Everyone always knows more than you do about your own condition and tries to give you advice and tell you its not that bad, but I often tell my cousin (who's really my only support) that I'd rather have anything over HS. I live a pretty reckless life now by my own admission, but my HS makes me feel like everything is over for me

Just joined as well...had it sine teen years and I'm now in my early 50s. I just got back from an appointment with a dermatologist who basically told it was nothing she could do and referred me another place at the cost of $90 for the visit. I'm feeling hopeless.

You sound like me. When it wasn't as bad I got out and did things....now I just look forward to easing the pain by laying down all the time...horrible life...if you can call it that....

Hi just joined here . i wad diagnosed in 2014 but having this so long but no doctor could diagnose it later on net i was just surfing and beimg inquisitive i search my symptoms in head of skin problems n then came to know the situation . At least now i m aware of my ailment but to my immense surprise NO TREATMENT shattered me . I wonder why me ??? But can't help but truly in this grup i think i can share thots as we share same Problem .

Hi there Snowwhite89, and others,
Yes, it affects every part of my life. This HS Disease is horrible to say the least. I was misdiagnosed by the VA for over 25 years. Going to The VA, or even grocery store are chores I loathe. I too, spend a lot of time watching TV on the couch. The pain never goes away either. Sorry to have to met you folks online like this. This is one of the best support groups going for HS Disease sufferers.
God bless us all here!
Btw.....If you need to apply for SSI/SSDI.

I felt emberassed for a long time aswell. It got better for me, hope the same for you.