Does anyone else have Hidradenitis Suppurativa?

Roo · 09-25-2002, 01:52 PM

Hi, everyone. I have had a skin condition called Hidradenitis Suppurative for many, many years. It causes boil-like cysts in areas where we have apocrine sweat glands (groin, breasts, behind ears, etc.)

Recently I had blood tests done to diagnose PCOS. I am waiting for results, but strongly suspect that I have it due to symptoms (overweight, acne, facial hair, skin tags, discolored skin on inner thighs).

The doctors say that Hidradenitis (H.S.) is a chronic condition with no cure and no known cause. They suspect that it is heriditary and there seems to be a link with hormone issues.

I was just wondering how many other Cysters have this problem.??

Also, if you have cysts/boils, but haven't been told it's Hidradenitis Suppurativa, I'd be interested in hearing from you too.

Thanks.

Rhonda K.

lamaannalove · 09-25-2002, 02:11 PM

is the condition progressive? has it spread to different parts of your body? is it contagious?

i know these might seem like dumb questions, but i've never heard of this before and it does sound like what's going on with me.

again, thanks for your info.

Roo · 09-25-2002, 02:28 PM

Hi. The condition is not contagious at all. It can be progressive, but that really varies from person to person.

I have one cyst that has recurred every couple months for years and years and I also get some that go away and never have one in that exact spot again.

My condition has gotten worse in the last two years. I used to just get a cyst or two in my groin area, right along where the edge of my panties hit. In addition to that, now I have been getting them on the underside of my breast. I have had one behind my ear and a couple on my lower abdomen.

I don't want to gross anyone out, but it might be helpful if I give more details.

The cysts I get from this condition start kinda like a pimple, but they get larger, and never develop a head. The larger ones start to look bruised or like a blood blister (if you've ever had or heard of those). The the cysts either go away on their own, or they rupture and bleed like the dickens, or if one of those two things doesn't happen, sometimes a doctor has to lanse or remove the cysts.

From what I've read on the Internet, some people have a lot more sever cases of this condition than I do. (So, in that respect I feel lucky.) Apparently some people get them around there anus, which has to be truly awful.

Again, I don't mean to gross anyone out, I just want to share the information, learn more, and communicate with others who might be suffering from the same thing.

My dermatologist said that pregnancy can affect H.S. In some cases it improves and sometimes worsens. That's because of all the hormonal changes that happen in pregnancy.

The information I have read says that H.S. is a "rare" condition, affective an estimated 1% of the population. But that's still a lot of people and my doctors say they actually see a lot of people with this condition.

If I can find the address of a really good websit that I saw when i first learned about H.S., I'll share it, I just have to track it down.

I can't stress enough that H.S. is not caused by poor hygene and it's not contagious. It is a very unapealing condition though. I know I have been depressed about it sometimes. Because of where the stupid cysts appear, it can affect intimacy because it's embarrasing. Luckily, my husband is very supportive, but even so, I know it's not pleasant for him to see.

I hope this information is helpful to you.

Please feel free to let me know if you have any questions.

One thing I love about message boards and chat rooms is that it makes me feel so much better when I communicate with other people who have similar problems/experiences.

If you think you might have H.S., I'd definately ask your doctor about it.

I am very curious about the link between H.S. and PCOS, if there is one. I know that both conditions have a link to hormone inbalances. My derm said that some of the meds my Gyn might put me on for PCOS may help control the H.S.

Good luck.

Roo-

lamaannalove · 09-25-2002, 03:59 PM

thanks so much for the info and for being candid. i am definitely going to ask my doctor.

kw0602 · 09-25-2002, 04:48 PM

I have never been diagnosed with PCOS. But I have almost all these symptoms. I have had this since I was a teen. I am glad you asked. I was a little embarassed to. Thanks!

Eva34 · 09-25-2002, 06:03 PM

Hello

I have hs as well as other things........

I had a large cyst (my surgeon said it was larger than an egg) removed from my right arm pit back in April last year. Now I have another under my left armpit.

I have felt a bit better with my hs once I started a health shop deodorant instead of a 'normal' deodorant.

pm me if you want

Eva

lemondog · 09-25-2002, 06:49 PM

Yes, yes, yes I have this!!!

Mine affects my groin area and underside of my breasts. It is awful...the hugest most painful boils, but luckily I have never had to have one drained or lanced.

I totally believe it is hormonal, because the only 100% "cure" I have found is birth control pills. When I am on them, I don't have one spot, but when I go off, it's bad. Plus, it comes in waves. I have not had any for the last several months (not on the pill), but lately I have had several, so I must be going through a rough patch.

My dad has it too, and he obviously doesn't have PCOS, so I agree to some extent it is hereditary. I have also heard that it is caused by insulin resistance, but I am definitely not IR at all, so that is not the cause in my case.

One bright spot - my dermatologist said it is not a condition that typically spreads or gets worse as you age, so she doesn't think it will get any worse for me, and so far she is right. I have had it the same (no worse, no better) since my first outbreak 7 years ago.

Roo · 09-25-2002, 07:03 PM

Here are two websites that have information about Hidradenitis Suppurativa. You can also find more by searching the internet with keywords "Hidradenitis Suppurativa". If you don't get many results, try using a different search engine like www.dogpile.com.

www.thebarricade.free-online.co.ukmainframe.html

http://www.capederm.com/info_hidrade...uppurativa.htm

I suggest copying and pasting these addresse, since they are so lenghty.

Thank you all for sharing your experiences with this condition (H.S.) It's such a comfort for me to hear from you.

Take care.

Roo · 09-25-2002, 07:16 PM

Boy these long website addresses are tricky.

Sorry, I left out a slash in one.

Here's the correct link:

http://www.thebarricade.free-online....mainframe.html

Roo

Erin31CA · 09-25-2002, 07:45 PM

I used to get these too. I would get them along my bikini line on my innner thighs. They were exactly as you described them. They started off like what I would think was an ingrown hair, but they would develop into a little blood filled sore.

After I was diagnosed with PCOS, my primary treatment focus has been low carbing and lots of exercise. This has resulted in a much lower level of androgens and even blood sugar levels. Since doing this, I have not had any cysts at all over the last year.

I definitely think it is related to hormonal and blood sugar levels.

KAT71NY · 09-25-2002, 10:20 PM

There is a link in Kat's CysterSites that I posted to the yahoo HS group. Since there is so little research and info out there, it is the best place to get up to date info on what is happing with Hidradenitis.
Have a look, you may find lots of helpful hints.
karen

Kate H · 09-26-2002, 01:15 AM

I had problems exactly like that throughout my teen years. Those suckers hurt! I had to have a few lanced just so I could walk normally. And the inside of my thighs are not very appealing looking...good thing I don't wear short shorts.

I haven't really had problems with it since I started BCPs and lost weight. My thighs don't rub together so much, and I think that helps keep the problem from reoccuring.

Thanks for the info!

FIONA · 09-26-2002, 04:35 AM

Yep, didn't know it had a name but I get the cysts/ boils all the time - in fact i have 3 right now - great fun innit??!!

cyster17899 · 09-26-2002, 11:54 AM

Thanks so much for posting this subject. I have these too. I never knew that they had a name. I get them in my groin area and on by butt. I have an appointment with my dermatologist tomorrow so if I get up enough nerve I'll ask her about it. This board is great!!!!!!!!!

lemondog · 09-26-2002, 05:14 PM

FYI - for those seeking treatment of H.S., another thing that got rid of my boils was long-term antibiotics. I took Bactrim for one round, before I developed an allergy, then I took Minocin (minocycline) for a round before I also became allergic to that. They really helped so that is a treatment option.

My dermatologist also prescribed this super-duty, prescription-strength anti-perspirant called Drysol, which did nothing, probably because my boils were caused by an internal problem rather than a blockage of the sweat glands. She also prescribed topical erythromycin, which also did nothing for me, so I just wanted to alert you guys to the things that may not work. I definitely found either birth control pills or long-term antibiotics the two single-most effective ways of eliminating the problem.