Hating Life
I’m having a hard time dealing with this. My “spots” are inflamed and I can’t walk. I’ve missed a week of work behind this , my birthday is tomorrow , & I’m laying in the bathroom floor wishing I wasn’t the one chosen to have this life. I’ve never felt suicidal until I have to deal with this immense pain and pressure on my inner thighs and buttocks. So much so that I can’t sit or even walk without agony. I feel like I don’t want to continue living like this forever and I’m scared just how much longer I will be able to handle it.. The only thing keeping me moving is a loving family and girlfriend but I feel like less of a man . I’m 21 and have such bad HS I can't even sit straight up. I weigh 127 soaking wet so the doctors have no idea why I have it. but I can’t say I’m not ready to end the speculation for them and myself. it’s just not worth this much pain , life is good and can be good but my quality of life as of the past 6 days straight as been god awful.
I’m sorry you’re suffering so much. Just wondering if you might consider consulting with a plastic surgeon. I fought a couple of abscesses on my upper inner thigh for about a year without success and finally saw my dermatologist who told me that it might need surgery as they were constantly draining and not popping due to the scar tissue inside. I consulted with a plastic and reconstructive surgeon shortly after that appointment because I was tired of fighting it. The surgeon immediately agreed that it probably needed surgery and I had the surgery last at the end of last November, haven’t had any problems with abscesses on either thigh since. And it’s calmed down overall even though I have been off my biologic most of the year due to a shoulder surgery in March. I’ve also been losing weight slowly but steadily. I know that is obviously not your issue. I hope I’m not breaking any rules with this response, but the surgery was so helpful and it was much less painful than I’d imagined it was going to be. But it’s a decision you have to make. I would also suggest looking into pain management if you aren’t already in pain management as this condition definitely causes chronic pain. Good luck.
how long did it take for your recovery? I’m just getting established so I dont really want to be down for too long. Thank you for the reply & good spirits! Hi
. Your concerns about surgery and recovery are certainly understandable. I can't personally speak to this issue, but I want to share with you this article from our editorial team on surgery as HS treatment: https://hsdisease.com/surgery. You will see that there are different types of procedures and thus recovery may vary. Hope this information helps with discussion points for a conversation with your doctor or a surgeon to determine if there is a procedure that would be helpful in your case. Wishing you the best and please feel free, if you like, to keep us posted on how you are doing and ask additional questions. Best, Richard (Team Member)
Hi
. Thank you for being transparent about the realities of living with this incredibly painful condition. You are definitely not alone and it takes courage to share how hidradenitis suppurativa can impact every aspect of life. We really appreciate you and value your authenticity and being open about this experience. Have you had the chance to talk with your doctor about the amount of pain you are experiencing? Or meet with anyone who specializes in mental health support? If you would like, I can send you a private message with some resources we have available. I also wanted to share this article (https://hsdisease.com/living/not-okay) written by one of our patient leaders, Selina, that might speak to what you are going through. Again, reaching out isn’t always easy, so I’m glad you feel comfortable sharing your feelings here. Hugs 💜 -Rachel I have and my insurance is holding my Humira from me so I haven’t really seen any progress. Hopefully I can in the near future because they are starting to become apart of my every day life.. ruining shorts & work pants . Thank you for your reply ! And good spirits they are always needed. Hi
. The fighting to get the continued access to biologic treatments can too often be difficult. Hoping you can get back on the Humira shortly. I do want to share with you this article from our editorial team on medications for HS: https://hsdisease.com/medication. There are a number of biologics available for treating HS. We know that changing medications can be difficult and certainly hope it doesn't come to that, but I want to provide the information in case it becomes necessary to have this discussion with your doctor. Wishing you the best. Richard (Team Member)
