Is it the entire vagina or just the owies and surrounding area?

I have problems there myself and had surgery to remove the sweat glands, skin, and tissue in the pubic hair area. Including a large portion of my labia majora. I am in recovery right now from the surgery.
I decided to have surgery b/c I am tired of it stopping me from enjoyingand living my life.

Hope you feel better soon :)

I was so swollen one time that a regular physician referred me to OBGYN, who admitted me into the hospital for testing and IV antibiotics. I think they had me on prednisone as well.

Have any of the doctors recommended steriod therapy or surgery?

My prayers are with you!

my daughter gets the swelling in that area too and the redness and all of that..... drives me nuts....right now she has a carbuncle in the groin area that does not want to go away. Have been on bactrim now for 5 days and it still has not drained or gone away.....This disease is a real bitch! and yes, I said it...it takes he fun out of life..... Michele when you all get owies like that do they take forever to get better? just curious? my sympathies to anybody that has this crap. it is horrible. tangerinebear ox

Me, too. I have 4 open draining wounds presently in that area. I remember one day I thought I had a bladder infection because I couldn't pee, and it would burn. But then I couldn't sit down at all, and thought my bladder dropped or I had a prolapse or something! I felt as though I was sitting on a ball. THis "Ball" was a golf ball sized boil that was right below my bladder opening, which made it impossible to pee. Now that it has burst (In 4 places) Yes, that's how big it was...I now have to hold a towel up to it, to pee or I will see stars. My doctor said there was nothing I can do about it, and it is a very difficult place to "heal". Occasionally I need to take Amox-Clav 400 mg for the pain. Since my periods have stopped I have less flare ups in that area, but I still can't pee without pain.

It is the entire vaginal area that is swollen. Mainly the pubic area. My gynecologist told me that the mass is siiting on top of my bladder which makes me have to urgently go all the time! It's not temporarily swollen, it has been swollen for almost two years. I have had cat scans and the skin has been punched out but no one can see anything. It's not cancerous, just may be a lot of scar tissue. One doctor mentioned surgery, but he wanted to try a ton of antibiotics first. He was an oncology surgeon, and the office visits were very expensive. $400 with my insurance just for my first visit, Got billed for seeing him, and billed again because his office is in a hospital. But at this point I'm willing to try surgery because it will not go down for anything! Hazelwood, I'm interested to find out more about your surgery. Thanks everyone!

Latechmami you can ask me any questions . I beenon many antibiotics and steroid shot to bring inflammation down in my groin annd inner thighs. I am so sick and tired of this crap stopping me enjoying life. I was at a stage that it wasn't getting better and started to get worst. I wish I started seeing the surgeon a year ago but I was to scared about surgery and stuff.

I had my whole left labia swell up on me once. It was so swollen that the skin looked like chcken skin..I felt like I was walking around with a dead appendage stuffed between my legs. It stayed that way I know for more than a week. And then it went away on its' own. I know mine had to do with my HS.

But I do have one small area near the opening of the bladder. It has already been biopsied and they told me it was thickening of the skin, basically...so this one I'm not sure about. But it does on occasion swell and drain.

Ladies, this disease is relentless. Do what you need to do to stay well.
I have had Elisa on paleo now Since Feb 3rd I think. It has helped her in many areas but she still has the swelling and issues in the groin. She is not breaking out anywhere else thank God..Before she broke out everywhere so I think we are definately seeing progress. Right now she is on bactrim for the week..... the derm wants her on antibiotics all the time. I think that is a horrible idea. one gets resistant to antibiotics if overused. We must forge on and I do know that gluten, cornsyrup, and grains are like toxins to Elisa....We eat veggies, fruits, and meats and do not eat any processed foods, refined sugar, or dairy...... I have to believe that nutrition is the key to this horrible affliction....tangerinebear p.s. my heart goes out to all of you!

I have suffered with this awful disease for 20 yrs and yes it has taken over my vagina. I used to have a normal one, now with so much scar tissue it is just huge. Can't wear cute undies or stretch pants because of this huge bulge. Can't ride a bike either! But I can't wait tom have surgery and have all the tissue removed. It will be a relief. I am currently off of gluten and nightshades and thought I was seeing a difference, but I ate pizza, and boy am I swollen today. SO since that is gluten and nightshades, I will have to start over. One thing that helps a lot when you have an abscess or start to swell is Tumeric powder. I take 3-4 tsps a day with black pepper. It works miracles within a day or so. earthclinic.com has a lot of helpful remedies for this .

Have you tried the paleo or autoimmune regimen diets to see if they help relieve the HS symptoms? If you haven't I would definitely give it a shot. My trigger was gluten. As you can see in the posts below from tangerinebear Elisa also has food related issues (gluten, corn syrup & grains) as well as Hill2184 (gluten & nightshades). In my experience and from reading many other posts it seems to take longer for the groin area to heal for some reason. I know after my last flare (when I tried unsuccessfully to reintroduce gluten to my diet) that it took 3-5 weeks for everything to return to normal again.

Good luck to you!