Yikes!

[cronnie]

yikes!

hello,

sooooooooooooo crohn's disease is really awful.

i have had moderate to (usually) severe crohn's for about 14 years. i had surgery just under 2 years ago.

it's easy enough to talk about the stomach-related pains of crohn's (at least with close friends), but how do you try to explain the further-reaching effects? i unfortunately experience pain with sex. like, a lot of pain. enough pain to make it a rare occurrence to even try.

my husband and i have been together for over ten years and married for three of those years. he is truly my best friend and the best support i could imagine.

however, the weight of this disease is getting harder for both of us to deal with. i have gone to a physical therapist that my gyno recommended, but did not see the results i hoped for. also at her recommendation, i am going to make an appointment with a pain specialist. at my last visit, she performed an ultrasound to ensure that on the gyno side, everything looked normal. this means that, apparently, the pain is coming from years and years of scar tissue.

soo....
anyone else dealing with similar and sad issues? how do you handle it? i feel so sad and guilty thinking that something totally beyond my control might be hurting my husband (and me too, of course). anyone have anything, anything at all, that has helped them? any experiences with pain specialists or certain physical therapy exercises worth mentioning? or any (ahem) positions that, in your experience, are better than others? and also, how do you deal with the more private consequences of crohn's - even if not this exact situation? it's a little overwhelming to carry this burden around inside my head. i have some extremely close friends who have gotten all the TMI of this disease, with the exception of this -- it just feels a little too private but it's hard having no one besides my husband to share it with. thoughts, anyone?

thank you for any help; i truly appreciate it.

:]

 

[chrisnsteph1022]

I had a lot of rectal and vaginal pain a couple weeks ago. Luckily, it only lasted a few weeks, but sex during that time was out of the question. We tried once and I had to take a pain pill. It scared my hubby and he didn't want to try again. There are other things you could do to take care of his needs without penetration.

 

[ameslouise]

Oh, Cronnie, I hear ya and am so sorry you're going thru this! I also suffer some pain on intercourse, and my gyno also told me it is likely due to scar tissue. It's not as bad as it was when my flare was really bad, but it can still be pretty painful. We have found that certain positions work better than others. Mostly, I have become pretty adept at giving hand jobs and blow jobs (can I say that here? this is an age restricted forum, right?).

Please be assured that you and your hubber are not the only couple going thru this. Sexual problems unfortunately run rampant with Crohnies - keep poking around the forum and you'll find lots of threads on this topic.

It sounds like he is patient and understanding. In my experience, the best you can do is continue to be open and honest and try to do whatever you can, in other ways, to keep your sex life active....

Hang in there! - Amy

 

[cronnie]

thank you for your responses! it's so good to chat to ladies that can sympathize! :] (although - so sorry you are dealing with this too!)

my gyno has even suggested talking to the surgeon who performed my crohn's surgery about his thoughts on a procedure to break up the scar tissue. has anyone ever heard of this before? i haven't followed up on that, so i have no idea the extent of that type of procedure, recovery, success rate, ect.

it's so hard because we've been dealing with this issue our entire relationship, and it's hard to fathom what could "fix" it. it's painful to envision this as our indefinite future, especially as we are interested in started a family in a few years.

thank you guys so much for opening up about something that can be hard to talk about!

 

[spingirl]

I am dealing with painful sex...but didn't know why. I had an ultrasound too and showed nothing wrong...but nobody ever suggested it could be scar tissue. I don't think I understand why that would be painful there...I just figured it was because I was in a flare and everything is all inflamed...and that was the cause of the pain...from pressure on my other side. We haven't tried for a while but I am just on new meds and things are calming down...maybe we will try soon. The emotional side of this disease is difficult. I have not had a doctor yet who will perscribe something for anxiethy yet everywhere I read...stress is not helpful for CD. I have so many neighbors and friends on medication...can't figure out why I'm not! I know it doesn't help your situation but sometimes it does help in a small way to know you are not alone...and you are most definately not. Feel free to PM me anytime. Lately I have not been online as much but will be again soon. Take care.

 

[cronnie]

hi spingirl,

sorry you have to deal with this too!

i have had a lot of ultrasounds as well.... to the point where i kind of just wish one of them would show something so we could "fix" it. however, they all come back fine, which is why my gyno thinks it is the scar tissue. i totally agree with you -- sometimes it's like.... why would i be having scar tissue so low? my crohns has always been in the lower stomach area, which is still much higher than where this most unfortunate pain is.

it is sad knowing how this is such a struggle for women in their relationships... kind of a surprise affect of crohns. i'm really sorry for you and your partner but you're right, there is something very reassuring to know you're not alone. :]

if something works well for you, please let me know! you can please feel free to PM me as well.