Hidradenitis suppurativa

My heart goes out to you, @amy75. Please keep us informed about your experience at Mayo, and what you are able to learn about surgical options.
In the meantime, if you would like to meet other members who may be able to offer their thoughts on what you are going through, other than HS, please let us know.
Good luck, and we look forward to hearing your updates!

I really do empathize with you, @amy75, and I do look forward to what information you get at your appointment at Mayo. I was told about the surgical options as well, but my dermatologist didn't want to do the surgery because he said it opened me up to more chances of cancer. So I'm really curious to hear what Mayo tells you. Not sure I would go through with the surgery just because of how invasive it would be and like you I have diabetes, but so far haven't had to go on insulin and I'm controlled by no insulin shots. I would think that the healing process would be a consideration as well. I have PCOS (Polycystic Ovarian Disease), which I didn't know stayed with me my whole life but really made Menopause even more interesting, Degenerative Disc Disease around my L4/L5 and was told 25 years ago that it would only get worse and they were right (my back ceases up and causes me to bend over walking from one location to another or leaning over a shopping cart). I've had my HS since puberty and I'm 61 now and I can't even tell everyone the places I have sores now along with the armpits (tunnels in those), under and on my breasts, in the groin area and beyond, and any place where skin touches other skin. I'm also in the worse case scenario of HS and have been used on numerous occasions as a great example of how this disease looks, not always with my permission. I've been prodded and poked and small surgical procedures done to remove some cysts that became hard and tender and never healed but was also told they might come back. I've done shots from one dermatologist (didn't do anything) and creams and lotions and soaps galore but I have very sensitive skin so all of them made me either break out or get rashes. I've pretty much resolved myself to live with it because I'm just tired of trying "something else" only to be disappointed. So will be interested to hear what you learn at Mayo. Best wishes and you'll be in my thoughts and prayers on your appointment and the results because I understand how frustrating this disease is even on the best of days. 🙂

It's been a while since I've written but I've been to see Dr. Otley and some of his colleagues at Mayo in Rochester. It was quite the whirlwind but I was incredibly impressed with their knowledge of my disease and the options offered to me.

I am declining biologics at this time because of the scary, potential side effects.

I've chosen surgery! I'll be having day surgery on the 20th of Jan. on my underarms. Wide excision with secondary intention healing. Meaning, no grafts and only very few stitches to help promote skin growth I will have large underarm scars and the healing time will be extensive. Once healed, I will have two more surgeries. I am hoping to be done with surgeries by 2018!

Why this is worth it to me. I am absolutely exhausted all of the time. I have swelling in my arms and hands because my lymph nodes are blocked and this will only get worse as my disease progresses. I want to really live again and I think this will be the beginning of that journey back to some health.

I've had so many medical problems in my life and I feel like my 20's and 30's were dominated by doctors and medicines, surgeries and a lot of fear and stress. I'm hoping this will give me some time to experience life as a healthy person, if only for a while!

I'm very excited and hopeful. It's been a long while since I've felt this way.

Hope all is well with everyone that has posted here.

So glad to hear this positive news, @amy75! Please keep us updated when you get time after your surgery.
Wishing you the very best,
Kanaaz

I'm going to ask my doctor about this Methylpredsinolone dose pack and see if it is something I can use. I'm a diabetic but not on insulin yet but do take a shot to help control my blood sugar so not sure if I can take it but can't hurt to ask. Thanks @mbrittain for talking about it. 🙂

Hoping that you get the results you desire from the surgery and that Dr. Otley is able to give you relief. I think all of us that have HS, all we really want is relief and just not as many sores, or none at all. I'll be watching your progress throughout your surgeries to see how it works for you and wish you the best!!! 🙂

Hi @amy75, @autumnleaves,

I just wanted to follow up and sincerely hope both of you are doing well? @amy75, are you done with all the surgical procedures?
I'd also like to introduce you to Connect member @arieon69, who very recently shared her experience with hidradenitis suppurativa in this discussion:
– https://connect.mayoclinic.org/discussion/anal-fistula-procedures/

I'm sure you will find much strength in your shared experiences.

Hi, there. I'm sorry you have to deal with this. I am an NP and have seen lots of women with this problem. I understand that most of these women respond well to antibiotic treatment, although the cysts seem to reocurre. Sometimes surgical removal gives some relief. Other than that bit of info I don't know any more. Good luck.

I'm so sorry your plagued with this! My daughter developed this is her late 20's. I'm a dermatology nurse and we see it quite a lot. The answer for daughter came with the nae of a topical gel called EMUAID. It calms and soothes the skin from inflammation, pressure making you more comfortable while the boils/cysts drain. She has also been using an anti bacterial,anti fungal soaps. This medicine is homeopathic, natural ingredients. It's also supposed to help with scarring. If you haven't tried it, maybe you could think about seeing if it helps you. And I wish you all the best. This stuff is horrible and i know it's painful!

Still need guidance?