I guess I didn't mention I have HS, which is why I'm part of this support group......
I was diagnosed with both HS and CD at the end of 2005. Hs started in my groin, has spread all across my pubic area down my butt cheeks. Recently started under my breast and arm pits.....need less to say I have image issues and get tired of dealing with the pain, bandages, tape, pads, ect.......
My CD is in remission, one less thing to worry about.
I sit on a donut at work, to make me a bit more comfortable.

I hear you all and hate this bloody disease. It blows my mind that there is no credible treatment and has changed my view of the medical system for the worst.

Take care all!
Hugs

Thank you for sharing. My HS started with a vengence under my arms at age 21, I will be 30 soon so thats 9 yrs in dealing with HS. Over time I started getting the sores in my groin and under breasts. It got to the point that I was unable to hold down jobs having to quit them while also being fired from them due to what the employers said "too slow" Even when trying to explain the reasons, they didn't care. They saw it as if I can't keep up with the job then I get replaced. I explained all this to Social Security when I moved to Washington state. I learned that HS is a qualifying disability under their rules so I applied and got SSI within 6mo.
In Washington the Supplemental Security Income is $674 /month. Not a whole lot to live on for some, but its perfectly fine for me, because I don't have very many bills and I live on my boyfriends' family property where I pay nothing, not even water.
My boyfriend and his family are very supportive of my condition. His mother is allowing us to use medical marijuana in our own home as long as it's not being abused. I can't even imagine being able to sit in my own chair smoking a fatty LOL. Seriously though, it would be no different than taking my meds everyday, just in a different way. My insurance doesn't cover medical marijuana, so I have to pay for it myself. Washington is trying to enact a bill that will allow medical marijuana patients to safely access their meds by means of whats called Dispensaries. I know there are tons in Cali, but as of now they are illegal here in some jurisdictions while being tolerated in others. That is what this proposed bill will create.
On Monday, Feb 7th 2011, there is going to be an executive session in the Senate here for the proposed bill. I hope it gets enacted.

i personally started smoking marijuana just for social purposes and for years i had problems sleeping so it would relax me enough to sleep. but as my hs progressed i noticed it did help a lot with my pain as well as depression. my doctors constantly complained about my smoking of cigarettes so 7 months ago i let cigs and marijuana go!!! but ive noticed my pain has worsen and my depression and mood and have problems going and staying asleep so i started looking into other alternatives. i started seeing a phyciatrist to help with emotions and started taking meds more. i personally miss smoking but my body doesnt crave it or want it but i just remember how well it made me feel and that is what i miss. i dont plan to start smoking anytime soon because of my frequent surgeries, ive learned my lesson smoking and recovering from surgery it took forever for my wounds to heal. but it would be nice to legally smoke marijuana one day because it does help alot

stay blessed!!!

Just sharing:

According to the Washington state law, the medical use of marijuana may benefit patients diagnosed with the following medical conditions: cancer, human immunodeficiency virus (HIV), multiple sclerosis, epilepsy or other seizure or spasticity disorders; some types of intractable pain; glaucoma, either acute or chronic; Crohn's disease; hepatitis C with debilitating nausea or intractable pain; or diseases, including anorexia, which result in nausea, vomiting, wasting, appetite loss, cramping, seizures, muscle spasms, or spasticity.
Some of the risks of medical use of marijuana may include possible long-term effects on the brain in the areas of memory, coordination and cognition; impairment of the ability to drive or operate heavy machinery; and physical or psychological dependence. Smoking marijuana may cause respiratory damage and possibly lung cancer.

Well I got a call today from my doc and he is against medical marijuana for my condition. I explained that there are other HS sufferers who are benefiting from medical marijuana but this did not change his decision. Why couldn't he just have said that at my appointment on Wednesday. He wasn't against it then or he would have said so. I think something influenced his dicision.
By law doctors are not required to agree with medical marijuana so he has his rights, and I have mine. The clinic that I am looking at going to does a self referral so I am just going to get my last doc notes and head on over there. Will update later.

WEED IS THE CURE INDEED ;) lol ive been doing it since high school and it has done nothing but help me :) I really want it legal... it doesnt kill anyone or kill brain cells. ( That's a rumor the government did to make people see it was wrong, watch the movie "The Union" for more information) yeahh like it helps with pain and helps me relax. Works better then any medication doctors ever prescribed me...

Update:

As of today I am a legal medical marijuana patient in the state of Washington. I am using mmj for chronic pain associated with Hidradenitis Suppurativa. The people at the pain management clinic were very professional and knew everything about the side effects and legalities of mmj in the state of Washington. If anyone has questions I encourage you to email me and I will answer to the best of my ability. Happy Health to all!

I know this discussion is old, but I have recently been smoking because of headaches, then noticed that it helped ease the pain from the flare I'm currently having. It's a shame that it's not legal in all states.

I smoke everyday, it helps with the pain and depression but it's not going to make everything better. It just helps deal.

I know people who are using it for medical issues. A friend of mine has some kind of marijuana salve, he uses it for his back! So, one day, i tried it on my armpits for the pain, and was pleasantly surprised how nice it felt! It actually helped the pain, however, i dont know how well it would work for "severe" pain. The time i used it, the pain was not real bad, but bad enough for me to want to try it. I know that stuff is $35 for a small jar. I dont have the $ to buy it, so, i guess i will bum some off my friend! lol! As far as smoking it! OMG! Tweeky! It makes me think to much to the point i have to take more klonapen to sleep it off! Everyone else i know smokes it like crazy and swears by its magic! lol! I just cant handle the stuff! 2 puffs and im ripped! lol! What a wimp i guess!

Medical marijuana is the single most important thing for a hs patient. not only does it help to reduce the inflamation, it also helps to reduce the stress that can cause these flare ups and not only that, it helps a lot with depression and the emotional stress that comes along with such a terrable desease.
i have back spasms or muscle spasms from straining from pain. cant seem to be able to just sit in one spot and be comfortable. when i go to watch a movie with friends or something i can barely sit the entire movie, therefore i miss a lot of what goes on in life just becuase of this.
when i was in college, just graduate recently, i would go from class to class with this giant bump on my butt. when i say down on the bus in the morning, the bump would open up and then bleed and then my wound would heal to my pants on the hour long journey to school. when i stand up on the bus the wound would rip open because it has dired to my pants, usually leaving a red/puss dot on my ass (so embarassing you have no idea). then it would bleed all the way to first class where i would have to sit on it again and it would dry to my butt again. after the 50 minutes ended i would stand and... rip... so much pain you have no idea how hard it is to conceal that amount of pain in a class. lucky me everyone in this world is so concerned about themselves and doesnt give two rats asses about the person next to them. then on the the next class, with only 10 minutes in between to go to the bathroom to wipe whatever blood i could. its not like i could take every day off. these bumps were there 75% of the time. if i missed that many classes i would still be in class right now.
anyway. 2 years of extruciating pain and i finally have my diploma. throught the time i was in school i was only taking 1-3 rips or tolkes of marijuana every night before bed. now that i am graduate i am smokeing much much more, stress levels are down and i havent have a terrable flare up like that in months. i wish i would have used marijuana more for the pain while i was in school. i wouldnt even have to smoke it and smell like a skunk in class. i would just bake it into butter and butter my toast in the morning to get medicated. or i could make a cookie or even a diabetic person peanut butter protein bar. there are so many recepies online.
now that i have met with a doctor via skype i realize that anybody suffering from this dibilitating desease doesnt have to suffer anymore.
please go to medicalmarijuana.ca and fill out the application. they will email you back within a day or two and just do what they say in the email.
***all you need is your dermotologist to say that yes you do in fact have hs***that dermotologist does not have to know anything about you getting pot for your illness, the doctors and people at that site will take care of everything.****all you need is your dermotologist to say that you have it.**** in other words you need to be diagnosed hs on your canadian medical file*** once the files are released for only a 50$ fee, the doctors will call you back if you are elligable.***
please consider it if you are living with pain. nobody should have to live like i was living day in and day out for that amount of time. nobody. if you ever thought of getting mj for this, i urge you to try it and see what you think. it has worked wonders for me

I never tried it and can't stand the terrible smell. I'd rather have a cigarette.

Medical Marijuana? YES.

I smoked being a rebellious teen and got in trouble so I didn't touch the stuff for two years. My sister's best friend has her red card and smokes with me all the time. It relieve stress and pain.

I say yes 100% to mm and it helps!
My mom supports me smoking and she is okay with me getting my red card in a week when I turn 18!

Ps. I live in Colorado. I only know two people who do not smoke so it's just kind of a thing here even if you don't get your card!

Forever13young... I live in Colorado too! I was wondering if you see a doctor who understands and/or specializes in HS.

I'm not a fan of the "high" feeling, but I'm definitely considering getting my medical marijuana card and buying edibles (I've heard they give you more of a body high rather than the whole stoned feeling). It should be a piece of cake in Colorado. I'm so glad I live here :)

I support medical marijuana. I personally don't smoke because I get anxious and paranoid when I'm high. But hell yes, instead of laying in your dark room all day thinking about how disgusting you are and hurting bad.....a little marijuana will lift most peoples spirits and let them enjoy life a little bit.

There is no cure for this disease....we need all the help we can get. I have smoked on a couple of occaisions. One I had worked all day in a snow storm......at the end of my shift a hole on my but started pouring blood.....or bleeding out. I went through a whole roll of toilet paper and paper towels trying to get it to stop. The manager was beating on the door to the bathroom. My mom called right as I was getting into my car to go home. I cried and just choked on tears to her on the phone. I was so frustrated and in such despair. I dropped my coworker off and she gave me a little joint.

I smoked it when I got home and soaked in an epsom salt bath. Boy did it calm me down and get me out of that despair.

That's how I use the stuff. When its such a bad day I feel like i'm going to loose it or snap. Get high so my emotions can reset themselves.

If that makes any sense,

Dus