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,...
I've had HS since I was 17 and I'm 26 now. I've been sent to doctors who put me on antibiotics and just switched them when they stopped working so I gave up and decided to just deal with it on my own.
Last weekend my roommate woke up and found me hysterically crying. I had to sleep sitting up that night because I couldn't lie down due to the pain. She called my mom who had her take me to the hospital. The poor thing spent her entire sunday in the ER with me.
I had a lesion the size of a gold ball under my left arm. When i finally saw a doctor he took one look at me and left the room. If you only saw the face he made. As if I'm not embarrassed enough. When he finally came back he told me that he didn't want to drain it in case he didn't get it all or some crap and gave me antibiotics and pain killers and sent me on my way. Then we noticed he forgot to write the prescription for the painkillers and against my will my roommate dragged me back. I didn't want anything else to do with those people. When we went back there was a different doctor there who not only gave me the painkillers but was very compassionate and drained and packed the lesion for me. he set me up an appointment to see a surgeon the following morning. The surgeon took a look and made me another appointment to talk at length about my options and in the meantime I now go to a clinic everyday and they clean, pack and dress my areas.
I see the surgeon for my talk on thursday and I was wondering if there was anything in particular that I need to talk to him about because I don't want to forget anything. If any of you have had surgery and could help me out I would really appreciate it.
Last weekend my roommate woke up and found me hysterically crying. I had to sleep sitting up that night because I couldn't lie down due to the pain. She called my mom who had her take me to the hospital. The poor thing spent her entire sunday in the ER with me.
I had a lesion the size of a gold ball under my left arm. When i finally saw a doctor he took one look at me and left the room. If you only saw the face he made. As if I'm not embarrassed enough. When he finally came back he told me that he didn't want to drain it in case he didn't get it all or some crap and gave me antibiotics and pain killers and sent me on my way. Then we noticed he forgot to write the prescription for the painkillers and against my will my roommate dragged me back. I didn't want anything else to do with those people. When we went back there was a different doctor there who not only gave me the painkillers but was very compassionate and drained and packed the lesion for me. he set me up an appointment to see a surgeon the following morning. The surgeon took a look and made me another appointment to talk at length about my options and in the meantime I now go to a clinic everyday and they clean, pack and dress my areas.
I see the surgeon for my talk on thursday and I was wondering if there was anything in particular that I need to talk to him about because I don't want to forget anything. If any of you have had surgery and could help me out I would really appreciate it.
Second, you need a surgeon who is willing to be aggressive with his scalpel. The doc has to be willing to cut it all out, including the tracts, or it will come back. Then you have gone through the surgery for nothing. If you want to chat let me know.
Good luck & don;t forget to stand up for what you need.
I have had between 2-3 surgeries every year for the past 7yrs, which they call isolated surgeries where it had to be done on a specific area for me to get relief, my Dr. would removed the one area that was so infected, large and painful. Just as Storm said you must be your own advocate, do the research and definitely if possible find a doctor that cares. Most Dr. are not very familiar with HS besides what they have read in books that is why HS is nicknamed "The Orphan Disease" most of us patients know more than they do. I was blessed enough to find a doctor who diagnosed me right away and didn't think they were boils & was very familiar with HS, who had patients before me with severe cases like mine so I was in good hands. If you are uncomfortable ask many questions, tell the Dr. of your findings, etc.
I went all the way up to stage three when I was no longer getting isolated incidents they were all over and the pain was too much to bare let alone function. In June of this year after many surgeries I had to have the sweat glands removed under both arms which my Dr. tried to avoid for years but it was inevitable at this point they were all over and beyond painful. I am now dealing with the pain of healing/recovering which is a different type of pain. This disease will take a physical & emotional toll on a person bc it is so under rated and overlooked, but I understand your pain and I pray for you.
Hope this helped some....