What to do....

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hi , my hidradenitis is in my groin  area , I have open channels which leak constantly meaning I have to wear pads all the time. It's itchy painful and awful to look at , it's really getting me down I'm on lymecycline but that's just preventing the abscesses from getting too big , I can't see any future for a relationship as who would want to see or be near this , any advice please 

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  • Posted

    You'll find someone that won't care about the scars, the lumps, the pain. I hate it, but my partner doesn't care about the look of it one bit. I can't help you with the leaking, I've only had one that was continuously draining and I used pads for it. Sorry I can't really help, but you there are people out there that don't have a problem with it. It's not something we can get rid of, just something we have to live with.

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  • Posted

    Hi first of all I am the same have had them for over 25 year in the groin are my latest flare up has lasted 1 1/2 years with it constantly leaking I have just been put in the lymecycline again to try stop it getting big again so I know exactly how you feel it may sound daft but try some sudocream on a cotton pad it kinda stops the itching a little bit stops anything from sticking to it and it also contains zinc oxide which is supposed to help I have been doing this for a bout a week now and I can actually go out the house without scratching for about 2/3 hours I reallly hope it helps a little as I say every little bit of advice if it helps a little bit it will help us a lot good luck 🙂 And let's hope for a cure soon !

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  • Posted

    Hi Anne I have the same thing and see a specialist/ Derm for HS. Are you seeing a Derm who also knows about HS? So many drs don't know as much as we wish they do. I am very fortunate to have the top leading one in the US. He is one of two who does a surgery called co2 laser. I'm on a three month waiting list to have it done. We also have a new treatment waiting for the FDA to approve it and things will turn around for us with it. Its so much safer than Humira with hardly any side effects. As we all know there is no cure, but a way is coming to keep it under control. I also can send you a list of Doctors in your area who specializes in HS. I hope this helps. 

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  • Posted

    I have tried a number of treatments but the only thing that has helped and given some relief is the rifampin and clindamyacin combo. they really help stop the flare ups, and help with inflammation. talk to your doctor about these!!
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    • Posted

      Me too Paige but the side effects wasn't pleasent plus I was on them for so long. The doctor had to stop me in order to get a break from them to stop me from getting too used of them. The down size is I ended up with high potassium. Please make sure you have your bloodwork done while you're on them. 

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  • Posted

     Hello! I use paper towels instead of pads. I fold them a few times and place them over the area. For itching, I use ice packs. I usually make them using 2 zip lock bags, one I put some ice and water in and the other i drop the first bag in so it will not leak. I have had this last break out which will not heal for about 4 years now. This Forum has been kind of helpful. I have tried many new things, none of which have completely worked yet, but it beats going to the doctor for them to look at it, give me meds that don't work and tell me see you in six months. They did want to operate and leave me with a big hole in my groin area to heal on its own. I declined! That's when I got serious about trying to figure out if I can find out what is triggering this and stop doing what ever it was. So far I haven't. I stopped eating Nightshades, cut way back on sugar and food in general and it's still here! I started applying Manuka honey, i guess it is helping. I used Vicks vabor rub as someone suggested and it seems to help. I am at stage three. I have been married for a long time and it has caused a change in our relationship but we are in it for the long haul.

    I pray that you are healed and that God sends you the person He has created, just for you! When He does, they wont care what you have, they will love you for you!

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    • Posted

      Thank you to you and everyone who's given advise , I really can't believe the lack of medical help or research into a cure 

      good luck in our quest for relief or a cure 

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