Hello Karaokequeen84, I am grandmother to a soon to be 16 year old Downs girl that has this HORRID condition. She has had 1 surgery so far, but has had the condition for a long, long time. Probably 5 or more years. I thought it was just acne but no - it is much worse. Her surgery was under her left armpit. The bump kept growing and because she has a heart condition (she had open heart at 4 months old) the medical pros do not mess around with her. They tend to take care of any potential infections pretty quickly. That cyst was the size of a golf ball when they went in after it. So while the surgeon was in there he just "cleaned out" all of the other tracks and potential problems while he was already in there. Then they just left that area open and let it heal - which took 3 weeks. She has a great mom and dad and a grown brother - so she gets their full attention - as well as the rest of us. I will say this to you - from what I can see and hear - the worst of this situation are those cysts/bumps BEFORE they start draining. The pain is pretty intense I understand. What I cannot believe is that there is NOTHING TO BE DONE ABOUT THIS CONDITION!!! It sounds like you don't have much choice other than to let them drain those but you know that any time they start cutting - it is not going to be pleasant. Make sure you get pain pills. And follow what they tell you to do. May God be with you. ~~The Tipton Family

Thank you. I have had cysts lanced and drained but they were as you described...a large lump that wouldn't open on its own. These are different and are surgical. I am just scared of the unknown I guess. Thanks for your prayers... I will do the same for you and yours.

Hi,
Ive had HS for 14years and from day one the doctors had no idea what it was they just kept saying its a cysts and the best way is antibiotic or/and cutting them out i have over 30 of them cut out all over my body and sometimes they still grow there, i have the scares everywhere and then i have spots from where they where and now i have some bleeding in the skin which has made some of my skin look really black (i have light colour skin) from them, now they are just a reminder everyday. Ive had them drained but they still end up cutting them out a week later due to it just growing again.

I have had the surgery that you are talking about in the same spots. Both sides in the underwear line, continuing back, as well as 3 inches down each thigh. It went well, and much tracking removed. Healing was quite awhile. Terrible spot, so whenever you move, it pulled and had a hard time healing. I would advise getting a body pillow to make sitting and laying more comfortable!

Fisherwoman...thank you for the suggestion!! I have surgery next Wednesday. Sounds like I will be there overnight. He is putting me on a 23 hour hold to see how I do. What about the body pillow helped you? I will need to get one if it helped! Thanks.

I have had HS for 17 yrs and recently underwent surgery under both of my arm pits, breast and groin area. I ended up staying in the hospital four days post-op due to the extensive surgery. Then I went back in on 7/12 to perform the second part of the surgery which was to remove the HS from the coccyx area. I only stayed overnight as the second surgery was not as extensive as the first. I would say the most important advice that I have to give to you is first make sure the surgeon specializes in HS. Do your research, if the clinic takes pictures ask to see other patients just to get an idea of what your wounds may possibly look like after surgery. Also be sure to have support at home. Wound care is not something that you will be able to perform on yourself due to the location of the wounds. Bring your supporter to the pre-op visit and thereafter. Two ears are always better than one. There is a lot of information being thrown at you. Also, be sure your support person has a tough stomach and can see a gruesome wound and still be able to keep it together and perform wound care. Also be sure to pick someone who will stand by you through the long hall. As it takes time for your wounds to heal depending on the severity of your condition. Wound care must be done daily, most times twice a day and you want to follow the surgeon orders no matter how tired you are that day to promote the best outcome for your wounds. I could go on and on because there is so much to this condition...best wishes to you!

I have 2 spots....one in my groin area and one under my arm. This surgeon won't do them both at the same time because he said it would be too painful. I kind of wish he would do them both so I can get it overwith but at the same time I am glad he's not doing them both. I will just be glad when it is over...sometimes I think just not knowing what will happen or what it will be like is worse than any of it.

Karaokequeen84 - when you can - let us know how you are doing please. I assume that surgery was 7/19 - or - it could be 7/26. let us know please.

Karaokequeen84, if your surgery is tomorrow, I wish you the best. I ended up with a 7 inch incision and a 9 inch drain tube that was open on both ends for 3 weeks although from the outside appearance it seemed very small so needless to say, I was shocked. I am fortunate that I can work remotely from home with my job so that was a blessing. My surgeon said due to the location it would be a 6 month recovery and he was correct in terms of the periodic swelling and getting back to my normal exercise routine. After the staples, stitches and tube were removed, I had some abscesses along the scar that took about 2 weeks to heal. It's was very disturbing after having surgery but my surgeon told me it was typical with drain tubes. Just know that you are not alone. I have found it to be somewhat comforting to feel like I can talk about this horrible condition with no known cure to people who actually understand. Good Luck!

Hi LelaWMS I've had a drainage tube about 2 1/2 years ago due to a post op going awry and developing and infection, my suggesting would be to watch out for the car tissue and possible tracts under where the drain was. I'm currently fighting battle with that and I'm in horrible pain with and trying to find a surgeon that isn't just going to cut me but understand my concerns and anxiety that comes with this condition