Hidradenitis Suppurativa Support Group

Hidradenitis suppurativa (hi-drad-uh-NIE-tis sup-yoo-ruh-TIE-vuh) is rare, long-term skin condition that features small, painful lumps under the skin. The disease manifests as clusters of chronic abscesses or boils, sometimes as large as baseballs, that are extremely painful to the touch and may persist for years with occasional to frequent periods of inflammation,...

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My story

MelissainOhio
MelissainOhio
Hello everyone my name is Melissa and I live in Ohio. I have had boils since I was 16 and I'm now 30. They started out very slowly and only had them around my groin area. The last 3 years has been the worst for me, now I get them under my breast, groin area, and really bad under my arms, and above my bikini line. My under arms is the worst though, I constantly have drainage under both of my arms and always have to keep them covered up so it doesn't transfer any where else. I never knew HS existed until I done some research online to see what could be causing this. I've visited a Dermatologist several times in the past here in my small town and I was given some antibiotic's and cream but that done absolutely nothing for me. I'm so embarrassed by all of the scarring that I won't even let my husband of 11 years to see my without clothing on, It's terrible that I feel so ashamed to not even allow him to look at me.

I don't have any insurance and was wanting to see if any one here in Ohio could recommend a good doctor that knows about HS that can treat it correctly?
lula73
lula73
Don't know of any docs in OH, but definitely look through and read the different entries on what has worked for others. Unfortunately there is no cure but management and remission is possible. My problem turned out to be gluten--as long as I avoid it I have no symptoms/flares.

As far as the scarring and your husband...talk with him about your feelings with being unclothed. See what he says. You may be very surprised. I am covered in scars from various surgeries unrelated to HS. My husband has always told me that he doesn't "see" them-- he sees me, the woman he loves. And he has built my confidence up to the level that I wear a bikini at the beach and pool now. It took 19 years of being with him to get to that point. But it is a freeing feeling when you trust that the one you're with is good with you as you are and you don't have to hide anymore. I can't even put into words how good it feels. My advice is take that next step and talk with your husband, then based on his response let him see.

Good luck to you!
MelissainOhio
MelissainOhio
Thank you Lula73 for replying to my post. My husband is aware of my situation and is fine and supportive of it, however I just don't have enough confidence in myself to show him I guess. It defiantly messes with my self esteem and how I feel about my body.
SRG43
SRG43
DR. Paul Hazen in West lake OH Hidradenitis Suppurativa Institute. I had CO2 laser surgery on my underarm there. He is one of the top HS doctors in the World.
deleted_user
deleted_user
I'm in the UK Melissa but I'd just like to add some support for you. My husband is very sympathetic and wonderful over my HS. He sees my pain and sometimes has to look if an abscess is in a place that I can't see it properly. It sounds like you have a good guy there who doesn't care about your scarring, understandable why you do, I'm embarrassed too, it's not easy.

Fingers crossed one day there'll be a cure for us, in the meantime, all the best to you x.
deleted_user
deleted_user
Me too on the embarrassment and scars. I have so many scars in the bikini area. I only get them in the bikini area and have two now next to each other. It was excruciating trying to work today. I had it since my teens and am now 48. I never had a name for it until my new dermatologist told me about 5 years ago. My mother has it as well. My husband is very understanding thank God because I have a few other problems that I deal with. I wear swim shorts because of the scars.