Connect with others who understand.

  • Learn from expert-reviewed resources
  • Real advice from people who’ve been there
  • People who understand what you’re going through
Sign Up Log In
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.
January 17, 2024
 · 
Be the first to react
myHSteam

It can be very challenging to find doctors who understand hidradenitis suppurativa (HS). Here are some reasons why:

- Lack of HS Knowledge: HS is a complex, hard-to-treat systemic disease that requires specialized expertise. Many doctors are not familiar with it
- Long Delays in Diagnosis: It can take up to seven years Show Full Answer

It can be very challenging to find doctors who understand hidradenitis suppurativa (HS). Here are some reasons why:

- Lack of HS Knowledge: HS is a complex, hard-to-treat systemic disease that requires specialized expertise. Many doctors are not familiar with it.
- Long Delays in Diagnosis: It can take up to seven years for a proper diagnosis, and even longer for people of color.
- Poor Practitioner Communication: Some doctors may incorrectly attribute HS symptoms to poor hygiene, which is not a cause of HS.
- Distrust of the Medical Community: Negative experiences with healthcare providers can lead people to seek support elsewhere, such as online support groups.

Finding a knowledgeable and empathetic doctor is crucial for better outcomes.

July 15, 2024
A myHSteam Member

It is hard and does take a toll on you mentally, it’s hard to offer advice on that as for me I just sleep too much (when my partners off work) other wise I throw on a fake happy face until my kids are in bed and usually then sleep on sofa until bedtime. Sending her healing hugs x

January 22, 2024
A myHSteam Member

I've mentioned it to my daughter about this site,she said she will look on it ,but her bloody Hs is flaring up again which makes her ill ,she's on antibiotics also,I've said to her she can look on this site,through my password and if she needs to say or reply she can,just let people know it's her on my account,I really hate seeing her go through this,she don't seem to get a break from this,not doing her mental health any good at all,bless her.x

January 21, 2024
A myHSteam Member

Hi dawn, I’m in the uk too, and feel my dermatologist very rude and does not want to hear any of my views , hoping next appointment is with a new dr. Whereas my nurses are so lovely, (see them 3 times a week for dressing changes from L&D ) even to point I can’t hide my sadness from them anymore. 😂
I had to wait about 4 weeks for my appointment but think that was quicker due to just having the surgery. Although it’s still all trial and error, I’ve had 6/7 different antibiotics since end of august, 1 surgery and 1 trip to a&e so, it’s all a rollercoaster ride I’m afraid, is your daughter using this site, I found it helped me a lot mentally to talk freely to like minded people, who actually truly understand the struggle we face daily. Sending hugs x

January 18, 2024
A myHSteam Member

I live in England,and it's just a waiting game over here,my daughter have to wait afew months to see one,which is so getting her down,and what is getting her down obviously when they come through and waiting for them to burst,but at the moment her armpits are smelling bad bless her,and her face is covered in acne .I just wish that a doctor would really look into this Hs,and give hope to Hs sufferers.My daughter feel as thou she's not getting anywhere with them,wish I had a magic wand for my daughter and Hs sufferers just to get rid of this,it's so upsetting see her go through this.x

January 18, 2024

Related Questions

View All
A myHSteam Member asked a question 💭
Nevada City, CA