I started showing signs of it after I menarched at age 12. I would get small breakouts (with larger ones sprinkled in there too) before and during my
periods but they didn't get REALLY bad until about a year after I had a hysterectomy at age 48. I am now 53 and still fighting it
It runs in my family...my Mother had it and all of my siblings have it in varying degrees.
I have tunnels/holes/leaks galore. It can be so discouraging.
I have pretty much given up on any type of romantic relationship at least for now.
The following is not medical advice (I'm not a doc, just a sufferer looking for relief too) but I have found that taking 30 to 50mg per day of
OptiZinc seems to help. My doctor suggested it. I also discovered some really good bandages by BSN/Jobst - Beirsdorf Coverlet....I get mine from
Amazon. They do not irritate my skin, they are flexible and repositionable, they can be cut smaller or made larger by combining two or more bandages
with gauze squares on top. They also come in a bunch of sizes and depending on the size bandage they come in boxes of 50 or 100 per box.
I swear by these bandages because I have to change bandages daily; depending on how big the alien is I have to change twice per day.
In addition to the aliens that come and go, I have an alien under my left arm that has been draining from three separate openings since 2006. I have
one on the lower abdomen that has been draining every single day since February of 2012.
I suspect that dairy may aggravate it but I also avoid bread, pasta and sugary stuff.
I also use a wash with pyrithione zinc a couple of times per week and Hibiclens the rest of the time. I also use Water Jel Burn Jel Plus, it seems to
help with the really painful ones (especially the open ones). It doesn't stop the pain completely but IMO it makes life a bit more tolerable. I get
that from CVS online.
I mostly use a zinc cream (diaper rash cream) on my bandage over the area..in my case it seems to help as well. I use either the zinc cream or the
BJP, I don't use them together on the same bandage.
I really am starting to consider the wide excision surgery..it's just finding someone (preferably a plastic surgeon) who knows about HS and how to
perform the surgery and put me back together nicely, lol
I really do wish that the procedure for Incision and Drainage that they use in clinics and ERs would be modified so that a short - acting anesthetic
could be used so people don't have to be awake for it... I mean you are already in intense pain and then they stick needles around the alien to
anesthetize the area. Honestly, there have been times I actually screamed it hurt so bad.
I panic every time I get one that starts to get really big and it looks like it isn't going to open on it's own because as they do it now, the I&D
is worse but sometimes it can't be helped
And antibiotics are useless...these are not normal bacterial infections. The antis may inially clear it but in many cases it just comes back and heck,
you can't be on antibiotics constantly.
This is a really awful disease.
Thankfully it is getting more press to make people (especially doctors) more aware.
It was by chance in 2000 during a visit to an ER for an I&D that the ER doc in the know told me what I had.
I replied with, "You mean there is actually a name for this?!"