Oh my, that is truly awful! I know what you mean about the bike I have not been on mine in forever! Maybe once I'm completely comfortable after this surgery I will give it a go! The worst part of hs for me is sex...my husband and I have a fantastic sex life still but there have been times where I would tell him no. Not because I didn't want to but because I simply could not think of a way to make it work comfortablely! I mean really who wants to think about (am I draining?) or ( ohhh I hope that sore does not smell with his face down there)! I've learned to work past it because let's face it he thinks I'm the sexiest thing alive sores and all, sooooo the negative crap is all in my head! Sorry if that is tmi but that's the ugly truth of life with hs

Sorry to hear about that swoozysnoopy...that's horrible. I hope you get well soon and plan that bicycle ride soon.

I know what you mean Chuck... Lol at "I hope that sore does not smell with his face down there." sometimes I feel self-conscious around my boyfriend. I often question if he smells my armpits. I'm glad I have a boyfriend that understands HS and sees what I'm going through. I'm glad your husband is a good support. :)

I'm so sorry you are having to go through that, it does truly suck, but you are in good company here.
I'm just curious, if you don't want to elaborate I understand, but I was wondering what kind of muscle problems started for you in 2007? I know that has to exacerbate the HS and walking issues. :(
On top of the issues with sex that HS creates, like chuckycharms said, the thing I hate about HS is how it makes me feel fatigued all the time. I wake up feeling like I never get enough proper sleep. And even on the days where I wake up and feel like I have gotten some rest, by noon I am feeling like a car running out of gas. I feel like I can't get out of my own way, much less anyone else's, and I feel sometimes like I've been running a 50 mile race with a bunch of 100 lbs weights strapped to me.
I feel so exhausted sometimes that if I lay down, telling myself "I'm just gonna rest here a minute and then I'll get up and do (insert whatever here), I'm not going to sleep." and inevitably I wind up dozing off or just flat out crashing. It sucks because there is so much I want to do in a day, and I never seem to have enough energy to do it unless I have taken some pain meds. From what I have been told (and have experienced first hand) by the doctor, I have the opposite reaction that most folks do to narcotic pain meds. Most folks get drowsy and sleepy eyed or just flat out go to sleep on pain meds. With me, I get the feeling that I have all this energy and like I could go darn near forever. The doctor says that is an "allergic reaction" to narcotic pain meds, but it's the only allergy that I have that I will gladly keep..lol
Another "dream" that HS affects for me, is being able to run and play with my 12 year old son. I haven't been able to run and play with him in years and that makes me really really sad.

Oh yes! I also know what you mean about the exhaustion! It's truly awful at times! I try to not let it slow me down! I play with the kids and walk with them and my wiener doggy several times a day but some days it really takes all I've got just to do my day to day activities! I can always tell when a big flare is coming because I will feel like I'm getting the flu or something, my hip will ache and my head will hurt and I can just muster the strength to get up with the baby and shower! That is the one thing my dr and I don't see eye to eye on he does not believe that is part of the hs and just checks my iron levels. But having felt the feeling so many times I know my body and that is sooooo the hs rearing its ugly head ( literally )! Sometimes I will feel so down I can hardly hold my eyes open, then I will force myself to mow the yard or walk or do some yoga. It helps to push past it because if I lay down I'm down for the count ....it truly is the worst feeling ever! Makes me feel like an old lady and I'm just in my mid 30's .... Still just a spring chicken, no one deserves to feel so worn!

Riding my bike has been my biggest physical hobby my entire life, grew up with it, used it for any transportation etc.
Now I can't use it anymore. It depresses me so much. I actually knew this would happen but I kept on my bike for too long, making the problem much worse. I haven't used my bike in about 2.5 years due to outbreaks getting really bad I had to stop eventually, and I'm still suffering outbreaks from bumps that were already forming under my skin back when I did. I do hope that not all of those will come out cause they're so many tiny bumps I dont think I would ever heal from those if they all were to pop out and swell.
But the worst thing is when I talk to my father about how much this upsets me, and he wont even believe me that I Really can't ride my bike anymore and he would actually ridicule my 'self-destructive' decision. Nothing self-destructive about making the decision never to ride my bike again, it would be self-destructive to keep riding it even though it breaks my lady parts.
I have social anxiety, so riding the bus is like the worst thing ever and it seems to take forever too, can't walk long distances because of fibromyalgia, and I get really depressed because of missing my freedom and my lovely bike. Believe me if I could I would do everything by bike. Great exercise and so much jolly me-time while riding my bike, and I have to miss it for ever.
One tip I can give is to actually do stay away from the bike for ever cause even when you're not having any spots, they will come from riding the bike, or well at least they do with me. I only have to sit on a saddle for 5 minutes and I can feel them getting irritated already. However healthy or lovely bike-riding is, it's not worth destroying your body.
I'm 25, I suffer bad fibromyalgia since 14, got HS around that age too, have had migraines and asthma my entire life, and deal with lots of mental crap, and yes I definitely feel like a fragile old lady. I so very much wish I could ride my bike, I think so far for me, that's the worst thing about HS.
In my country riding the bike is the most normal thing ever and people use it all the time for work and leisure, and I don't even have a good excuse to come up with when people ask me why I (of all people) all of a sudden don't ride it anymore. I come across as a lazy person because I can't use my bike, all of it is just total crap. I hate HS and really it's never been my biggest problem, it's actually easy to overlook it in the midst of my other problems but it's still to me the most dirty and annoying thing I have. Well fibromyalgia is worse for me as far as annoying, but pain is something you can get used to, while bumps that make sure you can't even sit properly or wear normal clothes and have sex and all the other stuff, well, not so much. It's very life disrupting. If I would ever be able to go back to work I couldn't even find a job because I wont be able to reach it without my bike. I wonder how much of my 'down there' will still be left ok in about 10 years. Sorry bout my complaints lol.

I'm sorry it's affecting you so much too. I wish none of us had to deal with this, and it's good to know that my father is wrong in telling me to man it up and ride my bike anyway cause I feel it's not good and reading the same issues here reminds me that I'm not making it up or being a drama queen who is taking my own happiness away.