Here We All Are | myHSteam

Connect with others who understand.

sign up Log in
Resources
About myHSteam
Powered By
Real members of myHSteam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
Here We All Are
A myHSteam Member asked a question πŸ’­

If you're not on my team yet I welcome you to join my team because unfortunately we are all in this together and I value everyone's comments and advice I also offer my support to any of you who needs it I've been dealing with this shit for 30+ years already so feel to read my story if you want it's only a small portion of what I've been through and most of it on my own I'm sorry that you share this pain in the ass of a disease with me but you have to admit it's nice to know your not alone ( I… read more

posted January 31, 2023
β€’
View reactions
A myHSteam Member

Hi Eddie. You have been dealing with HS for a long time. I only heard about it for the first time last year. The first case of HS that I saw was shocking and debilitating to the person. I pray that there will soon be a cure for this disease but until then, we all need to hang together with positive support for each other. This site is beneficial for everyone with HS to learn from other's experiences. Wishing and praying for much better days for us allπŸ˜€. I'm on your team.

posted January 31, 2023
A myHSteam Member

Your so right! I can remember when none of my doctor's even knew what it was and some literally looked disgusted by it. HS has kept me from enjoying a lot of times in my life and was never something I felt comfortable in confiding to people as the reason why I couldn't join them to do things or as to why I'm cancelling last minute. Finding out so many other people know what I'm dealing with and what it's like to have parts of their body scarred badly. It affects your ability to be intimate and since I've joined this great team I have the words to explain it and a whole community supporting me when I do. If it's gonna be a shit show it's nice to know I can come share my shit with people that get it. 🌞

posted February 7, 2023
A myHSteam Member

It's been a long time, I am so sorry your Doctor treated you so cruel and inhumane. Your explanation of what was done to you have really upset me. My advice to you is to get another doctor and check credentials before going to them. Again, I am very sorry. Take care of yourself, be safe and be blessed.

posted February 2, 2023
A myHSteam Member

my Dr's use to throw me up on a table,cut me all up not numb all the way stitches and staples in drain tube that felt really nice by the way when you go back to get all that out laid up 3 months couldn't hardly get around, makes you shy away going back to get butchered again. I tufted it out after all that I think when my eyes close for that final time is when you cure this disease.

posted February 2, 2023
A myHSteam Member

Hi Eddie, I have been dealing with it 29 years now, so not much less than you. My 58th birthday in May which will make it 30 years The doctor did an Incise and Drain on my groin area this last Thursday. I usually don't get them there, but have over the last month. I have in the past and was mostly scars. Nobody can tell me how long you are supposed to stay on the Humira for it to do substantial good. I have been on 8 months now. I am only approved through May. They all say it varies by person. The doctor gave me some Clindamycin topical antibiotic solution. I have heard it talked about on here, so maybe it will help. My husband really does have back problems and he doesn't understand why I am so πŸ˜” sad all the time or why I don't have energy. I am considering trying to get an appointment with the Dermatology and Laser Surgery Center in Houston. I definitely received better care in Arlington when I lived in Ft Worth. Beaumont, Texas is where my dermatologist is now. He is kind, but I definitely feel like he does not want to do surgeries, even simple ones. Very few surgeons in Beaumont and they are always booked up. My old MD in Arlington loved to cut and called me Kiddo cuz I was young then. So big city is great compared to midsize in my opinion. I am already on your team. Have a great day!!! 😊

posted January 31, 2023

Related content

View All
Do You Guys Use Topical Lidocaine On Cyst That Haven’t Opened Up? Ibuprofen Not Doing Or Is The Hot Compress
A myHSteam Member asked a question πŸ’­
Are They, Scientist,doctors,whoever, Seriously Working On A Permanent Resolution To HS?
A myHSteam Member asked a question πŸ’­
Anybody Else Not Overweight?
A myHSteam Member asked a question πŸ’­
Continue with Facebook
Continue with Google
Your privacy is our priority. By continuing, you accept our Terms of use and Privacy policy.
Already a Member? Log in