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,...
About 20 years ago I had HS and didn't know what the heck it was. I finally went to a dermatologist and he put me on antibiotics and Accutane. He also zapped my sores with some zapper thingy. It totally went away for 15 years. I have been struggling the last 4 years to get it back under control.
I went back to the same dermatologist because if he helped me once he can help me again right???? WRONG!!!!! We tried different courses of antibiotics for 18 months straight. I had constant yeast infections and stomach discomfort. I did 6 months of Accutane, that only gave me the worst chapped lips I have ever had in my life!!! Once in awhile he would use a syringe full of something to at least take the inflammation down. Finally he told me surgery was my only alternative.
During this time I became chronically fatigued, unable to lose weight, depressed, adrenal fatigued and just plain miserable. Finally my husband said I don't care what you have to do but you have to get better.
The next week I made an appointment and a Hormone & Health Clinic. After a few appointments and several different blood and saliva tests we changed my Spironalactone dosage, changed my thyroid med from a synthetic to a natural. She even gave me an extra half dose for the afternoons. What an improvement.!!!! She also recommended for me to see a therapist. It is so nice to have a whole body/mind care. After my preliminary appointment I stopped taking the antibiotics. I figured it couldn't get any worse right???? That was last April. Although my HS hasn't improved much my well being has.
At the beginning of this year she recommended I see her nutritionist to see if I had any food intolerances. Not really the kind that make your throat closed, but the kind that cause inflammation. It came back with dairy being my biggest concern, along with sugar, chicken eggs, yeast, walnuts and amaranth. So I tried to cut way back on all of those.
Not good enough, she wants me to completely remove dairy for 3 months. I am on my 3rd week and really struggling. I LOVE CHEESE!!!!! How long do you have to be completely dairy free to know that is your trigger? Potatoes and gluten showed up fine on my test, does this matter or do I still need to eliminate them?
After my last remission I had a tummy tuck ( longer story, bottom line I had a 12 lb baby boy) and I used to get sores along my pant line. Since having all that skin removed when my HS resurfaced I have not had any sores there. So I am hoping to go into remission again and have a upper body lift to remove excess skin and tissue. Has anyone had anything like this done?
I was also concerned about 2 sores on the outside of my private area, they have been filling and draining for over a year now. Does anyone have any suggestions on how to make them stop? It is very uncomfortable and embarrassing.
Thank you to all of you that have taken the time to read and respond to my post. It is comforting to know that there are others that know how your are feeling and have genuine compassion.
I went back to the same dermatologist because if he helped me once he can help me again right???? WRONG!!!!! We tried different courses of antibiotics for 18 months straight. I had constant yeast infections and stomach discomfort. I did 6 months of Accutane, that only gave me the worst chapped lips I have ever had in my life!!! Once in awhile he would use a syringe full of something to at least take the inflammation down. Finally he told me surgery was my only alternative.
During this time I became chronically fatigued, unable to lose weight, depressed, adrenal fatigued and just plain miserable. Finally my husband said I don't care what you have to do but you have to get better.
The next week I made an appointment and a Hormone & Health Clinic. After a few appointments and several different blood and saliva tests we changed my Spironalactone dosage, changed my thyroid med from a synthetic to a natural. She even gave me an extra half dose for the afternoons. What an improvement.!!!! She also recommended for me to see a therapist. It is so nice to have a whole body/mind care. After my preliminary appointment I stopped taking the antibiotics. I figured it couldn't get any worse right???? That was last April. Although my HS hasn't improved much my well being has.
At the beginning of this year she recommended I see her nutritionist to see if I had any food intolerances. Not really the kind that make your throat closed, but the kind that cause inflammation. It came back with dairy being my biggest concern, along with sugar, chicken eggs, yeast, walnuts and amaranth. So I tried to cut way back on all of those.
Not good enough, she wants me to completely remove dairy for 3 months. I am on my 3rd week and really struggling. I LOVE CHEESE!!!!! How long do you have to be completely dairy free to know that is your trigger? Potatoes and gluten showed up fine on my test, does this matter or do I still need to eliminate them?
After my last remission I had a tummy tuck ( longer story, bottom line I had a 12 lb baby boy) and I used to get sores along my pant line. Since having all that skin removed when my HS resurfaced I have not had any sores there. So I am hoping to go into remission again and have a upper body lift to remove excess skin and tissue. Has anyone had anything like this done?
I was also concerned about 2 sores on the outside of my private area, they have been filling and draining for over a year now. Does anyone have any suggestions on how to make them stop? It is very uncomfortable and embarrassing.
Thank you to all of you that have taken the time to read and respond to my post. It is comforting to know that there are others that know how your are feeling and have genuine compassion.
I go to the Gyno today for my yearly. That's always fun, NOT! Luckily I have been with her for years so she knows about my HS.
I found out there is a HS clinic at Mayo, only 3 hours from my house. I am really considering going but haven't brought it up to hubby yet. Unfortunately he is not very supportive of my health problems. I am afraid to get surgery because last time I had sinus surgery he was not helpful or caring at all. I am sure my mom would help out, maybe it's just a man thing.
I will look for the clay then next time I go to the health food store, or look for it on Amazon. Thanks!