Hidradenitis Suppurativa Support Group

As some of you may or may not know, I recently sought out medical treatment for the second time. The first time, I didn't like (and still don't) antibiotics, so I quit.

My HS is on the verge of stage 3, with armpits, breasts, and groin/buttocks area affected, complete with sinus tracts.

My dermatologist started me on 100mgs of Doxycycline once daily, Clindamycin lotion twice daily, and asked me to shower once a day with Panoxyl acne wash.

Now, let me tell you, I am not a fan of showering every day as my hair is frizzy enough, and am quite forgetful of the lotion. I have tried my best to take my pill every day, but alas, I have forgotten that on occasion as well.

In the last month, even as the temperatures have soared up into the 90's, I have had ONE flare up, it was a tad painful but drained quickly. I had one threatening to form under my left arm, but after attacking it with the lotion and antibiotics, it decided to go away without becoming painful or draining.

I believe if I hadn't forgotten my pill two days in a row, that flare up wouldn't have happened. I'm not saying I'm cured, but boy am I better. I intend to get a job with decent health insurance and eventually have both armpits grafted, but until then, I am quite happy with the results so far.

Attempting to quit smoking has been horrible. Did well for two weeks, then relapsed. Oh, the frustration! But I truly did want to see if it was not smoking causing this miraculous healing or the antibiotics.

I have joined a gym and intend to get down to a good weight for my height, as I know extra baggage can help flare ups along.

Well, that's my progress so far, thank you for reading.

HSV It's so good to see you doing so much better! It's great that you are being so proactive and trying different things too.

Keep it up and don't be a stranger, y'hear? We miss seeing your kitty-cat face on here. Now, go take your meds!

Karen <3

I am so happy to hear that things are "looking better" for you in the HS department. I think that we are all guilty (I know that I am) of forgetting to take our meds & to do the things that we should be doing and to not do the things that we should not be doing. I am currently beating myself up for enjoying a casual walk with the husband (in the heat) knowing that I probably should not have and now I am fighting new flare-up's in the groin which make me never want to go for a walk again! Ugh.

I am hoping that you continue on your good-luck streak and I am also hoping that you can stick with the quitting smoking. I know (personally) how difficult that can be. I tried several times and until I became pregnant, I was never able to kick the habit. I still find myself visually picking out each & every smoker that I see on the side of the road, etc... just because I think my brain misses the physical action of smoking. But, I know that I have someone else depending on me to not smoke, so that is my basic means of motivation. My only worry is that once baby girl gets here- I may have the inclination to start back up again and that is the LAST thing that I want to do. Anyway, keep your chin up & we are all thinking of you! <3 Candace

Thanks for the kind words Karen and Candace.

Candace - I'm glad you've stopped smoking! Just remember, you're doing awesome, your baby girl will thank you! Even after she arrives, she would still thank your for not smoking... I remember being a kid and watching both parents smoke, thinking, "Gosh, that looks so cool!" SO not cool

Excited for you & your baby girl. I personally don't want kids, but I get all excited when someone else is about to bring a baby into the world. I hear HS backs off a little while pregnant. Besides the walk in the heat, have you noticed a difference?

Well honestly, my flare-up's "were" being mild until the last few days... so I am guessing that my hormones are beginning to get all out of whack again lately. I was praying for the "remission" that I also heard so much about during pregnancy and apparently, I am not one of the lucky ones... I am also starting to get so big in the belly now, that when I am starting to flare-up in my groin I cannot see the lesions to investigate them (size/quantity) so I just have to feel around to see if there is anything that I can do to soothe the current pains. Ugh!

Well, I hope to hear from you again soon & would love to hear that things are still calm for you! <3 Candace

Icky! I know sometimes antibiotics can stop working, I'm hoping this treatment works until I have the health insurance/ paid vacation time to get surgery. But I'm not sure what I want anymore That would sure be a lot of skin being taken off

Ah, well I hope your HS flares get better soon!

I would recommend reading "IndianaMom's" description that she typed out for us to see, about her experience with surgery at the HS Institute under Dr. Hazen's care. It really cleared my mind and any questions/concerns that I had about surgery. She also started posted pics, as well as Doves pics of her husband's recovery, and even though they look very painful/graphic- I am pleased to hear that they are already "feeling" better in terms of HS pain. <3 Candace