1. Community
  2. Skin and nails
  3. Hidradenitis Suppurativa

HS Relapse - I don't want to live anymore.

Posted , 3 users are following.

NonTimeboMala
NonTimeboMala

I suffred my first bout of HS back in 1999. I had large red painful lumps for years until one burst under my arm. In a short but extremely painful 8 months I went from being somewhat happy and normal to a recluse. It 1st developed under my right arm, went to my left arm, went to both sides of my groin within 1 month. I was extremely sick and the ER had mentioned that it was becoming a serious systemic infection. I needed left arm right groin operated on in July.

The end of September I had my right arm and left groin operated on. In december it quickly relapsed and formed again under my right armpit. I healed ok with seriously painful scarring and lesions under my skin. The disease relapsed again the following July of 2000 rectally. Of course the doctor did not realize this was another recurrence. From the numerous surgeries in a very short period of time I have permanent nerve damage as a result in both arms and groin/pelvis. I suffer from severe IBS bordering on Chron's like intensity as well as PTSD from a childhood rape.

The anxiety and major depression have taken a hold of my life and I can see no end in sight. 16 months ago I started developing the cysts like formations in my rectal and perineal area with occasional minor breakouts on both sides of my groin and legs. In the space of 2 hours I have developed masses the size of tennis and golf balls that will just as quickly leave. Now I have suffered another flare of it after developing it on my right shoulder, my neck, rectally again and around my groin. The typical DR visits followed by useless antibiotics to try and stop it which one actually exacerbated it.

Last year I had a staph infection on my buttocks and together with the HS it has made the last 12 months hell. I cannot get ANY help with the pain, I'm terribly alone and I'm worried I might kill myself. The depression is staggering and I have no where to turn. The fistula that opened on my groin has grown more severe and painful as well as developing a very large tender area immediately across from it on my leg. The pain now goes to my stomach and I'm constantly nauseated.

There is seemingly no one that will operate and I'm on my last legs mentally. How can I continue?

0 likes, 3 replies

3 Replies

  • NonTimeboMala
    NonTimeboMala

    Posted

    In my original bout I was classified as stage 3 and a serious systemic infection as a result. I have also developed this in my eye lids, my neck, my back and my buttocs and this is happening simultaneously again. This has currently developed in my old surgery scar and I'm afraid there is nothing left to remove after the original masses which were the size of golf balls were removed.
  • hypercat
    hypercat NonTimeboMala

    Posted

    Hi how awful for you.  I also suffer from HS so I understand how painful and disabling it can be.  Mine is nowhere near as bad as yours though.  

    Firstly have you seen a dermatologist?  If not you need to go.  Has the doctor tried you on different antibiotics?  I find doxycycline helps all but my largest ones. 

    Once you find an antibiotic which helps you need to take a maintenance dose which might do some good.  I used to take texyclinine which was hopeless but a much strong one might do the job.  You also need an emergency pack of ab's to take immediately.  

    I have suffered from these for around 15 years and fortunately have been clear of the huge ones for a while.  I had some which kept recurring so I got my doctor to refer me to a surgeon who got all the infection out and these have been no problem since.  Mine started on the top of my inner thighs which are all scarred now and look awful.  It spread to my stomach and now it's reaching my upper arms.  I dread a new attack.  

    I think you should go back to your doctor every time you have one and demand some action.  I also think you should be given some strong pain killers for when you need them.  

    One last thing for me stress was a big trigger so I try and keep as stress free as possible now.  Not easy though.  Am always here if you want to chat either here or pm.  Thinking of you.  xx

  • kaymate
    kaymate NonTimeboMala

    Posted

    Hi nontimebomala

    please don't despair. I'm sure that Each and every one of us reading your post can sympathise with you. A lot of us have probably suffered the mental anguish that you're experiencing now, I know I have. Your case sounds very severe and I'm wondering if this horrible condition has been made worse with the trauma you suffered in childhood. 

    I have learnt that the best way to treat the gremlins, (boils/abscesses) is to never touch, prod, squeeze or poke them, as this causes immediate swelling which is the most painful thing. If I can manage it, I cover with a dressing, which takes a bit of imagination and ingenuity given they are always in the most awkward places. This helps minimise rubbing against clothing and other skin in that area and gives some relief. 

    Be be strong and try everything that is suggested on these forums, some might help.

    One day someone might find a cure for this, we can live in hope. 

    Xx

Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.