Hidradenitis suppurativa

I started using OTC soy estrogen called Soy Care and it has helped me tremendously....other brands did not work. Hidradenitis Suppurativa support group on FB is good resource.

I had one really large one on the back of my neck Jeanne Ann ... and so far it hasn't come back and it was the size of a extra large egg. It kept coming back over and over and each time, it got bigger and bigger. But it was more of a cyst consistency and less like the HS breakouts I constantly have. My doctor found an ointment that helps mine heal at least and takes a bit of the pain out of it but no matter what I do, it's just painful all the time. My dermatologist wouldn't do any surgery on the HS under my arms or in my groin area because he said, it probably would come back. And removing the sweat glands opens you up to more of a chance of cancer. So, still dealing with the HS and stay in as much as possible and I agree ... it's hard not to have pity parties because folks just don't get why I can't spend time out in the heat with them and think getting out of the house will help. I can have lunch with a friend but can't do anything physical or that keeps me outside for any length of time or I'm miserable. I never realized that so many people suffer with it. And having PCOS makes it worse even in the post menopausal stage that I'm in right now. Guess the hormones being messed up is bad for us ladies in more ways than one.

Mine is severe as well .... stage 4 from what I can tell and I have them everywhere that skin touches skin so I empathize with you. It's painful and no relief. Do do skin grafts and anything like that ... it will just come back. I've had HS since puberty ... I'm 60 ... so I've had it for 45 years+ and it only gets worse as you get older. So sorry you are suffering with it as well.

Thanks for reactivating this discussion @autumnleaves. I hope @midnight @mbrittain @sandig @drew1991 @msdodo987 and the others sharing here will return to update us on how things are going.

@autumnleaves how do you explain to well-meaning friends and family that "getting out" is not what you need and that it doesn't help?

Those that are close to me, friendship wise, know about the disease but still think that "depression wise", getting me out is the solution and don't stop to realize that in the heat, it's a sentence for more sores. But I think it's more that they are just trying to help and don't know how. When I do turn them down, I talk about how that will affect me, unfortunately, but that I appreciate their concern. My family completely understands and doesn't put me in that spot. In fact if they think it will be the slightest warm, they are looking for solutions to the situation. I'm blessed!!

I try to tell them that getting out in the heat only makes the sores come more rapidly because the exposure clogs pores that I can't reach and causes more sores. Getting out and about does help the whole depression aspect some, but what I go through to make that possible isn't worth it. I've been told to go gluten free and hundreds of other things that will cure it and of course none of them work. The issue is not what I eat, or what I try to put on it or bathe in ... it's an issue of large sweat glands and clogged pores with as little as a hair that doesn't come through the skin. No matter how many times I explain this, friends just don't seem to get it because they don't understand it for some reason. It's frustrating but I've gotten to the point where I can't help that they don't understand, I just deal with it and push on.

Hi @autumnleaves,
You are absolutely right: living with a chronic skin condition like HS is not just about physical symptoms; it can have social, emotional challenges as well, You have already taken a major step by explaining your condition to your friends and family, and by communicating your reasons for being reluctant to go out.
Thank you for keeping this conversation going.

Hello everyone,

I have HS. My mom has it. My brother has it and my maternal grandmother had it. Beyond that we don't know how far back it went because people tend to not talk about HS except with very close friends or other sufferers. I have the most severe disease out of my other two family members - with HS hitting all of the fun spots, groin, armpits, under the breasts and weird spots that really don't have much friction going on, like the side of my torso and one area near my hairline on the back of my neck.

Despite weight loss, quitting smoking and eating better my disease has progressed to the point of daily draining and significant pain.

I am headed to Mayo in November for their HS Clinic. I'll see a Derm, go to a class about weight loss and another class about relaxation and stress reduction. Then will possibly be scheduled to see more doctors during the week. I am hoping for some actual results and not the fluff that I've experienced for years by doctors that haven't a clue what to do about this disease.

My local dermatologist believes that I need to be extremely thin and the only way to treat the disease is to inject Kenelog into each flare as they come. I would be in her office every day if I was to follow her HS treatment. I am also, unfortunately, allergic to the preservatives in steroid injections. I break out in hives and then generally have severe facial and torso folliculitis in the weeks following an injection....but with this disease, we are always willing to try and get relief, even if it means putting ourselves through some other affliction.

Anyway - I'm very anxious to get my appointment underway and to see if Mayo has any new idea's about how to treat this. I know Humira and Remicade are now being used but I don't know if people with other conditions can use those medicines safely.

I just want my life back.

Hello @amy75,
Welcome to Connect; I'm so sorry to hear about all that you are going through. You have come to the right place, and you will see that you are not alone in your experiences.

It sounds like you've done all that you can to try and ease your pain, and taken the next step to see a dermatologist at Mayo Clinic. Here's some detailed information to help you get ready for your appointment: http://mayocl.in/2dWBVsh

The drugs infliximab (Remicade) and adalimumab (Humira) do show promise in the treatment of hidradenitis suppurativa. These "biologics" are TNF inhibitors. They work by neutralizing an immune system protein known as tumor necrosis factor (TNF). Of course, your doctor will know best about the drugs' reactions, and the link above includes these kind of questions and discussions to have with the doctor at your appointment.

@amy75, have you ever considered a surgical approach to treat HS?

Thank you @kanaazpereira !

I appreciate the information. I doubt I'll be eligible for the biologic meds but I'll find out more on the 7th of November when I see Dr. Otley.

I will be expecting the surgical option to be my best option. I've seen two plastic surgeons in my area and both didn't really know what to do except remove tissue and do breast lifts. Once we started talking about skin grafts for my underarms I spoke with my Internist. She suggested I should go to Mayo because of the degree of surgery I may need and the fact that it can be quite disfiguring if not done correctly.

I also have Barrett's Esophagus, Allergic Asthma, Graves Disease, thyroiditis, diabetes (insulin only T2), chronic pain from 4 spinal fusion surgeries, and something going on that hasn't been diagnosed as of yet. My job is my health. I never thought my life would be this way. It's been interesting for sure. I hope this appointment goes well! I need some hope!