How do we deal with certain situations?

[nh_user_900249]

I have had HS for 15 years.  It has gotten so much worse in my 40's.  I have flare ups in my groin and inner thigh area constantly.  The good news is they are not as big as they used to be.  Instead of dealing with golf ball size bumps they are more like nickel size and drain on their own pretty quickly. However, once they open and drain, the healing process takes forever and usually just ends up filling back up.  SO here's what I would like to hear form others dealing with this awful and embarressing disease.....How does this effect your intimate relationships? I have been married for 4 years and told him before we got engaged all about this problem and he was very understanding but now that the bumps are constant I do hear a lot of complaining about lack of intimacy.  Sure there might be other things we could do together in that sense, but honestly, when youre in that much pain and draining through your gauze and underwear...does that really put you in the mood to do anything??  The other problem that has arisen is my job.  I work with all men in a construction setting.  Luckily I get to sit at a desk and when I have flare ups and walk with a limp I just tell them I tweeked my back.  Well, they have planned a team building thing and signed all of us up for a 4 mile run for charity!  RUNNING?!!!!  I can't even walk half the time!  I told my boss I cannot run do to a medical condtion and hoped that would be enough.  Noooo, his wife texts me and says she will walk it with me instead of running.  I had to tell her that with my condition it is hit or miss if I would be able to participate.  I CAN"T tell her what is really wrong, she will tell my boss and I will be mortified.  Even of I am having a good day with minor bumps and can walk....4 miles of friction and sweat would put me in a terrible place the next day.  What do you all suggest?  I read this forum every day and everyone is so helpful and supportive.  I hate that we all are going through this but I am glad we have each other to lean on.  

Thanks for listening! 

[nh_user_593935]

Oh, hell no.

You were much more gracious about that situation than I would've been. If anyone, even my boss, had signed me up for a 4 mile run without asking their ears would've been ringing for a month. And then to have them try to do an end run around your decision not to participate...just no. Don't waffle on your position, make it clear to your boss and his wife that you have a genuine medical condition that prevents you from participating. If they ask what that condition is, just tell them it's an autoimmune condition and you'd prefer not to discuss it. If they really push it get your doctor to write a note.

Personally I'd tell them I run for survival, not for charity. I donate every month, thank you very much. And the next time they sign me up for a team building exercise it darn well better be for a netflix marathon or something.

As for your hubby, I can totally relate to that. Like you, I told him before we got engaged and he was very supportive and has continued to be so throughout our marriage. There were some days though, during some horrific flare ups, that I could tell he was missing our intimacy. He never said anything unless I brought it up though. We made some compromises. There were some days I was in so much pain the thought of anyone or anything touching me was unbearable, and he learned to respect that. There were others where I wasn't in pain so much as extremely self-conscious about what was going on down south. Kind of hard to feel attractive when you have bodily fluids leaking from orifices that should't exist. Some of those days we...well got creative like you said. Whenever I had good days, we took advantage of them.

I also had to learn to communicate to him what was going on with my body. I had to constantly remind myself that he's not a mind reader and if I'm having a good/bad day he needs to know. That said, if you're in too much pain, or you're just not feeling it, your hubby needs to respect that.

As embarrassing as it was, the best thing I did was to sit down with my hubby and make a code so to speak. We kept a calendar on the wall, in the morning when I got up, I'd make a mark on the calendar. Red was a bad day, yellow was an in between day, and green was a good day. Red days were flare-ups and were strictly off limits, as in touch me and it'll be the last thing you ever do. Yellow meant I had a flare, but would be open to exploring alternatives. Green meant I'm feeling good, and today would be a good day to...ahem. This kept him up to date on my status and also alleviated some of the tension about having to constantly ask, especially since I'm not good at initiating. FYI, we didn't always umm...initiate a countdown on yellow and green days. It was just a way for him to know that I was open to the idea. We both had jobs and kids to deal with so we had some dry spells, but that system worked for us. Although, we did have to move the calendar to the bedroom after my mother-in-law started asking why I was coloring the calendar. Awkward...

Find a system that works for you guys. Don't be afraid to talk to him about it, he's probably just as embarrassed about talking about your intimacy as you are. If he's not willing to work with you or willing to respect certain boundaries, then I'd say it's time to get a marriage counselor involved to help mediate.

Hope this helps. Good luck!

[nh_user_922809]

I feel for you and know how you feel of course. It so embarrassing to tell anyone. Do you take any medication for HS ? I take doxycycline. It helps. But still get occasional flair ups. About your boss and all, I don't think anyone understands if they don't have this disease. But I would just keep telling bosses wife you really can't and stick firm to it

[nh_user_900249]

I've tried tons of meds. I think my body has gotten immune to them. However, I have not tried doxycycline.  The one that worked the best for me when I had a giant one on my tailbone was Cephalexin. I just don't want to be on antibiotics all the time.   Yeah I think I will stick firm with the bosses wife. Let them just wonder what the hell is wrong with me.  😜  It's no bodies business. 

[nh_user_922809]

I understand not wanting to be on antibiotics all the time. I have been on it for about 10 years + can't be good for you but I do it to keep them away or getting bad ones. Your so right it's no one's business what is going ok on with you

I wish you all the luck with everything

[nh_user_908126]

I have not been diagnosed, but I feel I have had this for 30 yrs. Now I have acne like bumps in my genital area constantly. Not a lot of pain, but constantly there. Some drainage and light bleeding. Is that part of it? My doctor says it's acne and very common, but it is not clearing up. I use anti bacterial soap., tea tree oil, neosporin, etc. Any suggestions?