Saturday, April 16, 2011

Sex and Cf (PG-13...I think)

Such a taboo topic sometimes.  And I know many of us get all red faced and embarrassed when we talk about it.  But someone needs to right?!?!

Sex and having CF.  What does this mean for us? 

For me it meant no changes to my sexual behaviors until a few months ago.  I could do anything and not be hindered by my lack of lung function.  However, as I watch my FEV1 slowly decline, I see a decline in my tolerance with sex as well.  Such a bad correlation.  It's logical for it to happen but why must it?

P would probably and will probably beat me for postong some of this stuff, but I won't be graphic LOL. 

Sex for me now means no on top action.  If I decide to "take the plundge" I last about 2 minutes, though it feels like an hour, till I must roll over and practically die and let him do the work.  So lately I have forgone the attempt and just been the rag doll.  I HATE IT.  Not being able to be active during sex is one of the worst things ever (besides not being able to breathe which coincides lol).  You can still enjoy yourself when he takes the lead, but how many of us actually enjoy ALWAYS letting him take the lead?  We want to be in charge sometimes right?  Why must CF take that away too?

I doubt I am the only one out there who experiences this so the door is open, respond with your comments, but remember this is a public blog so please no graphic details ;)


  1. I'm having the same problems. My FEV1 is at 19% and I feel horrible because honestly, I love being intimate with my husband but I just can't now. Sometimes I think I'm more intimate with my oxygen and albuterol than I am with my hubs. Of course we snuggle and kiss but sex is few and far between. Most of the time it's great, but other times I can't focus on anything other than my lack of breath.
    So cool that someone blogged about it. I've had my attention on this subject for awhile.
    L, Phee

  2. Hahah I love that you blogged about this! I feel the same way. I honestly feel bad for my boyfriend. He puts up with so much health wise and for the past few months he has suffered intimately as well. I am being worked up for transplant now, and just that is knocking me out. I wish CF didn't have to bother with these aspects of our lives!

  3. It was important for me to stay intimate and continue to have a regular sex life with my husband even when I had 11% FEV1. I think it was just as hard on him to watch how difficult it was for me though. I pushed through the pain and feeling of suffocation :) There were times where I could be more 'involved' but other times it was just too much. Not to mention the 'intermission breaks' for a full blown coughing attack. And lets address how 'unsexy' wearing oxygen on my face made me feel. But I got to tell ya'll. . . .post transplant Sex is AMAZING! Just one of the many wonderful benefits of getting new lungs. LOL.

  4. That's some other good points. Who has the energy for sex when we use our spoons for cooking cleaning etc.

    Jamie I can't not wait to experience post transplant sex! I can't wait for P to meet the real me in so many aspects of life!

  5. ugh - and don't forget the sexy "accessories" we get to use in bed (O2 and accessed ports, anyone?). SO much fun to have a needle staring him in the face whenever he tried to check out the chest area, right?

    ultimately, the one "plus" side i have noticed is that i really think CF makes me appreciate sex -- maybe more so than i would otherwise. i'm so used to thinking of my body as a war ground, or as fair game for a bunch of doctors to stick and poke and prod and examine and whatever, that it becomes a real release to have sex and feel my body as an object of pleasure rather than pain. that might seem a little personal, but i doubt i'm the only one who feels that way. i continued to have sex right up until my transplant and then was "back in the saddle" about a month or 6 weeks after. it was important to me not to lose that side of myself.

    cheers to CF sex...and to all the sexy CFers ;)

  6. I can relate, Being hooked up to oxygen was always an adventure!

  7. I am actually the opposite... I have to be on top for a few reasons. One, laying fairly flat, and having someone on top of me, even if my husband never touches my chest, makes me feel like I am going to have a panic attack because I am convinced that I cannot breathe like that. So I'm pretty much always on top now, because then I can also control the rate... if I need to catch my breath I can slow down, and when I have it, I can go.

    Haven't done it with o2 but when I am PICCed, he calls me his cyborg wife.

  8. Thank you for posting this. I feel so bad for my partner. Sometimes I can't believe he still finds me attractive with all the tubes coming from me. I too, look forward to the time when our sex can be like how it was in the beginning, when breathing wasn't an issue for me.

    Just visiting your blog (from Australia)

  9. Having my port accessed for the first time has made me feel very un sexy. I can be on top, but when I am on bottom, or laying down, whatever we're doing, I have to get pillows to prop up. So it's always a lot of readjusting and me saying "hang on" and grabbing pillows to prop me up, etc. And then, when we're done, he pretty muh has to get off, because any weight on me makes me feel like I am suffocating. It stinks. I haven't had to add 02 in to the mix yet. I said something about my port last week and how it made me feel kinda gross and he replied. "It's a lot better than having it hang out of your arm," so I am assuming that was his male way of saying it was OK. Still, I left my shirt on, which made me a little sad. sigh. Glad you brought it up though, it's good to talk about it with people who understand!

  10. I am so glad you brought this up- I would love to chat about this on Cystic Gal- would you mind if I repost with you as author?

    My comment: I have to say that this was really difficult for me during the last part of pre-transplant. I am a pretty sexual person and basically, lack of energy and tiredness made it so I was like YEAH RIGHT to my boyfriend at first. Then, I got more comforable sleeping (like actual snoozy sleep) with him with my o2 on, and then sex with o2 on was more "normal" and actually sort of hilarious.

    I have to brag that post-transplant sex is seriously AWESOME and I agree with what is written above- I think I appreciate it way more because it's sort of a whole new situation when you don't have to think about breathing AT ALL during it - like the rest of life.

    xxoo and keep doing it,

  11. I don't suffer from CF but my boyfriend does. He will always be sexy to me, PICC line or not! We've yet to experience a oxygen mask, but I believe we are on our way there. I can say that no matter what, I will love him the same and always accept him the way he is!

    The only reason I google searched sex with CF is because it was in his history on his computer and I know it bothers him. He is currently in the hospital because he has dropped to 26%, which he admitted to the day he went to check in. I had wondered why he had been not so into getting it on and now I have a better idea. Unfortunately, he is not eligible for a transplant. What can I do to make him feel more at ease with everything?! Any suggestions as to what I should and shouldn't do as far as being physical? I'm already seeking help concerning his depression with this and its a daily battle. So, if anyone has some insight, then I would be more than happy to hear it.

    (I prefer to stay anonymous in case he searches again...)