HS diagnosed but no help yet...

Hi. I have been suffering from recurrent boils that are very painful and debillitating. At first it was one here and there a year, but in the past 6 to 12 months I have had recurrent boils on my inner thighs that make it very hard to walk, stand, sit... daily life is just plain painful!
I am losing work over it and although I have joined a gym to lose weight (my doctor said this may be helpful), I am unable to attend when I have flare ups on my thighs. The ones under my arms are not usually so bad as the thighs and go away more quickly, but the ones on my thighs almost seem to take turns going from one leg to the other constantly! I have now had bandages on my thighs for a whole month as any rubbing seems to bring out more and more of these painful sores!
My doctor suggested that this is HS, but I am also worried itmay be MRSA... he doesn't seem to think a culture is in order and says that other than bactroban cream, HS has no cure and that there is nothing else he can do.
I have tried warm compresses, turmeric, bread and milk poultices, cortisone creams, polysporin, you name it!
Please if anyone has any help for me let me know! I am getting married in September and this painful and ugly recurring nightmare has even taken its toll on our intimate times together - who wants to get all romantic when you have boils and black scars on your inner thighs and under your breasts?!
I had a tubal ligation many years ago and dont think my Dr is about to prescribe birth control pills... please help.
Angel.... In Agony


This discussion is related to best treatment for Hidradenitis Supporativa.

[SD_Native]

My sores/boils appeared during my 7th month of pregnancy with my first daughter two years ago.  Because of its location and symptoms, I (and my OBGYN) chalked it up to hemmorhoids.  It wasn't until my 6-week check up after my daughter was born via scheduled c-section (approximately 4 months after the HS first appeared) that my OBGYN looked at them, said he had no idea what they were, and decided to send me to a proctologist (again because of the location).  The proctologist diagnosed me within seconds and told me I had two options - long-term antibiotic treatment or surgery.  I opted for the antibiotics since they were less invasive (which meant I had to stop breast feeding) and after almost three months, there was no change.  They didn't do anything.

I did some research online and found some homeopathic remedies and later on found a naturopathic doctor.  Of course, these treatments are not covered under most insurance plans so it has become quite costly but I've seen a lot of success, more than I thought possible.

Anyways, I first tried Manuka Honey and saw some improvement.  After 8 months of suffering and hopelessness, this was a miracle!  This is special honey from New Zealand (only place the Manuka tree exists) and has natural antibiotic properties, moreso than other honeys.  I purchased it through Manuka Honey USA, they have a website that you can google.

I would take a large bandage, cover it with honey, and apply it directly to the sore every night before bedtime.  I imagine it would have been better if I could have done it during the day, but because of its location, it would be rather messy and difficult to do while working in a professional office.  Anyways, even with just the night treatments, it really helped, especially with the pain.  The sores would seep out and the swelling would begin to go down within a couple of days.

Having some success with a natural remedy (the honey), I searched out a naturopathic doctor (she also prescribes homeopathic remedies).  She is awesome!!  I was very hesitant to go to a "witch doctor" (as one friend called her) and mentally questioned her treatments, but desperate times called for desperate measures.  I met regularly with my doctor, followed my treatment plans, and saw even greater success.  At their worst, the affected area swelled up to the size of a grapefruit - it was huge and oozing and gross.  When I went to see my naturopathic doctor, the swelling was down to the size of an apple.  She got the swelling to disappear, leaving me with the three sores that seeped slightly.

After about a year, I decided to stop my treatment when I got pregnant with my second daughter (she is due in early July).  Most of the homeopathics cannot be taken while pregnant and I didn't want to take any chances at all with my unborn child.  Since I stopped my treatment, I have gone back to using the honey, which does help.  When I started my 6th month of pregnancy, the sores flared up and are swollen once again and the pain has returned...

I am trying my best to deal/suffer with my HS for two more months until my daughter is born and then I will immediately return to my naturopathic treatment plan.  It was not an overnight success, but it was success in my eyes and better than anything else I tried.

Surgery is always an option, but I decided that it would be my last resort...

I live in San Diego, CA and will gladly refer you to my naturopathic doctor if you are local.  She is EXCELLENT!!  Either way, find a naturopathic doctor and try the Manuka honey - it worked for me!!

[pretty_in_pain]

Hi, I am 20 years old and suffering with HS. This is the worst pain I have ever experienced. I am so embarresed about my condition. I know that I cant help it but I feel like im disgusting. I just want it to go away. I just found out that I had this. I have been suffering with this for 4 years now. I cant believe that it has been overlooked for 4 years. I kept telling the doctors that something was wrong, but Im a stupid teenager and dont know anything. I get these "abcesses" in the groin area. It makes me feel gross. I cant even wear a bathing suit. This is just not fair. I am sorry I am so upset but I just dont understand why it is taking so long to find a cure. My doctor put me on Minocycline. I really hope this helps. She said that it might go away but the scars wont. I normally flare up every 6 to 12 months. I have little ones in between but when I am suffering from the big ones it is so dibilitating. My boyfriend knows that I have a condition but he doesnt really understand everything so he thinks I am over reacting about the pain. I dont want to show him Its really embarassing. If anyone wants to talk then e-mail me at ***@**** thanks to everyone.

[SD_Native]

I'm so sorry to hear about your HS - and I completely understand what you are going through.  Unfortunately, the sores develop and scar horribly and that is a truth.  There is nothing fair about this disease, and all of the unknowns make it that much harder to accept.  But we have no choice until there is a cure.

I can only encourage you  to do your research, there are different medications and treatment options available that may help.  Be aware of the side effects of the medications, especially any long term effects.  Be smart about your treatment and stay positive, as much as possible.

It's a very embarrassing disease and I can only imagine what you are going through at 20 years old.  There are bathing suits with boy shorts that work for me and may also work for you.  Avoid tight fitting clothes in the area(s) of your HS.  Avoid stress or any trigger that worsens your condition.

Above all else, you need to accept yourself as you are - and accept your condition.  Once you understand it, you can learn to identify the triggers for your HS and avoid them which will minimize your outbreaks.  There many, many treatment options so if your current medication doesn't work, don't lose faith - try something else.

As for your boyfriend, try to share as much of your disease as possible.  I'm 33 years old and have a wonderful husband of 4 years - and I have yet to share 100% of this disease with him.  We love each other and have been intimate with my HS, but it is still very much an embarrassment.  And I expect that until a cure is found, the embarrassment will be with me forever.

In the long run, HS doesn't change who I am.  And it shouldn't change who you are either.  Good luck and I hope you find a little comfort in knowing that you are not alone.

[pretty_in_pain]

Thank you for listening to me complain. I am trying to accept the way I am. I do find more comfort knowing that I am not the only one who has this. Thanks again

[adonaya]

i have had it for 2 years now. at first they told me that they were bumps from stress. then i had acne, and now after many different treatments i have found something that is helping alot. my doctor put me on doxcycline and my flare ups have stoped. I get a bump here or there every once in a while but they are not coming in clusters anymore. it dose not help with the pain but makes it so they don't come as offten. I was told i am in stage 2 so if that helps. you should ask your doctor. It dose have a side effect though, you get a yeast infection when the treatment has finished.

[manicmom322]

I am 30 yrs old and feel the same way you do. I cant wear a bathing suit, or dress in fashion because it causes flar ups. I just want to be normal and knowing that it isnt possable makes me depressed. I have a couple of questions....Hemroids related? thyroid problems related? being tired all the time related? plus I some times get really big hives could that be related?