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,...
Well, an entire year has gone by since I was diagnosed and i'm still stuck. Numerous times I have mentioned a primal / gluten free diet to my parents and they still won't help me do it. I have mentioned surgery but "That's a bit drastic don't you think?" Is what i'm told.
I love my mother, and I know she cares and that she is stressed out too. She isn't a very good cook and usually buys fast food for dinner after working 4-7 hours depending on her schedule. But I absolutely hate the things she tells me sometimes... "Just wait" or "It will get better someday."
What the *bleep*???!?!! "You won't live like this forever." Okay fair enough but when am I going to get the things I need? She sees me everyday leaking from my breasts, crotch and behind. Every time I sit down I wince in pain because I have one right in my crack.
I don't know what to do. Some days i'm hopeful because things seem to be improving and then the next night i'm in tears because i'm bleeding like a faucet. What do I do? I have been to a doctor and was prescribed Doxy in November last year. It didn't help, I have put powder on every one of them to try and suffocate them. It doesn't freaking work!
I don't know what to do because the things other people have said that helped them I can't do.... I guess i'm going to live a life of chronic pain and agony until I die of sepsis or something.
I love my mother, and I know she cares and that she is stressed out too. She isn't a very good cook and usually buys fast food for dinner after working 4-7 hours depending on her schedule. But I absolutely hate the things she tells me sometimes... "Just wait" or "It will get better someday."
What the *bleep*???!?!! "You won't live like this forever." Okay fair enough but when am I going to get the things I need? She sees me everyday leaking from my breasts, crotch and behind. Every time I sit down I wince in pain because I have one right in my crack.
I don't know what to do. Some days i'm hopeful because things seem to be improving and then the next night i'm in tears because i'm bleeding like a faucet. What do I do? I have been to a doctor and was prescribed Doxy in November last year. It didn't help, I have put powder on every one of them to try and suffocate them. It doesn't freaking work!
I don't know what to do because the things other people have said that helped them I can't do.... I guess i'm going to live a life of chronic pain and agony until I die of sepsis or something.
Good luck to you!! :)
I know it can be hard for others to not understand what you are going through.
As for surgery, I had surgery under both my armpits in July. I am so glad that I made that decision. Sure it has taken me a while to heal, but I am still glad.
Have you asked your doctor about surgery?
About the depression, I have depression too. I can't work right now and probably won't work again for awhile and this makes me depressed. I try to find something each day to make me happy (me time).
I hope this helps you.
The surgery wounds themselves took up to a year and beyond to heal. Now guess what, they are open again.
Gluten Free? Been there done that...No help in that department.
True, no one understand what we are going through, not even our own doctors. They just don't learn enough about it in Medical school...
Pain Meds? What's that? You can survive without pain meds...(Just take "TYLENOL" Is what I am always told) That would be nice if it would actually "Touch" the pain.
What people don't have, people don't understand. You may want to bring them to this site to ask questions and to read stories.
I've tried everything! But I have been given tablets to reduce my testosterone. I've also been told to try Botox... This was by my hormonal specialist and Dermo team. Surgery should only be considered as a last resort. Trust me, as soon as they drain it - it will come back again. Then if they remove the gland - another one will pop up right next to it!
I remember once, my sister referred to my op where they drained it and I had a two inch hole in my groin as "just a scratch" yeah, goes to show you how much people know or listen to you when you explain it to them!
My friend however, read about this condition online and since then she's been very supportive and understanding of the pain and suffering we all go through. She's the only one who has made an effort to educate herself on this horrible condition! It will never go away and there is no cure. I hope your parents read this and understand that you need to see someone to discuss your options and how try and find a way to keep yours at bay. Or at least to find some method to help make you more comfortable. Good luck!! X