Having real hubby problems

[Becky Boo]

Ohhhhhhhhh this is so hard :o( Hubby's being horrid all the time at the minute :o( We haven't had sex since January when this awful burning between my legs started. I was diagnosed with IC in May & PFD shortly afterwards & know I also have some form of vulvodynia. I'm in pain everyday although some days are better than others. I've only been taking meds for about 12 weeks & still have alot of bladder burn (especially when I'm due on like now). These conditions have changed me because I've had to change, it's nothing I've brought on or wished upon myself. I miss my carefree fun life more than anyone but I feel like he blames me because he feels like he's loosing out :o( mostly with the sex. He's always been very sex driven - don't know how we're gonna get through this :o( I do try & keep him happy in other ways but just lately that doesn't seem to be good enough so now I don't even wanna do that, I mean whats the point if it's not keep him happy anyway! What's more, sex is supposed to be something you BOTH enjoy isn't it? I don't wanna be touched sexually at the mo at all :o( Don't want to be sexually arosed when I suffer from bad cliterous pain. My boobs don't hurt as hubby would say but I just struggle to feel sexual when I'm always sore! Forgive me for asking but is there anyone out there with the same conditions as me that has regular sex? How regular do you have it? How long did you wait after being diagnosed? Were you relatively pain free? I know we're all different but I'm finding this a real fight & just don't feel I can fight pain & my husbands constant needs :o(
Thank you for reading & please, help if you can!
Big hugs & hope we're all having a comfortable evening (or morning maybe lol)!
xx

[amaranthe]

I dont have it as bad as you, but I definately have my moments with it. I feel really bad for you though. But, I wish I could say I didnt do it when I didnt want to. :( I just try to get thru it. (Fortunatly my husband is very fast.) If he werent, it would be alot worse. I dont really like it at all. I enjoy the closeness and intimacy, but the sex part, I hate! But, lidocaine and lots of lube helps alot, and taking a muscle relaxor and a pain pill helps too. So does taking a hot bath afterwards then putting a bag of frozen peas between my legs. Then resting for the next few days and doing absolutely nothing, is my secret. (YEP, I go thru ALL THAT for 5 min!) But, I am differnt from alot of ICers I read about here in that I know my husband doesnt understand alot of things and SURE wouldnt understand not having sex for several months...he just wouldnt. I am not saying that it is wrong. If anything, what I am doing is probobly wrong. And what your husband and mine are doing is definately wrong. I mean they both see how much we hurt and what we go thru afterwards just to make them happy. So, I guess I am not the right one to answer this particular post. I guess I just wrote cuz I wanted you to know that you arent alone. Lots of us are in the same boat. Like I said at the begining of my post...fortunately, I dont go thru it all the time, there are times when it doesnt hurt me at all now. But, when it DOES hurt, it hurts BAD! And he just doesnt get it either. Anyway, just want you to know i understand. Feel free to pm me anytime. As you can see, i dont have any answers, but am willing to commiserate.

Sending hugs,
Amaranthe

[SandyRN]

Sorry to hear you're having this problem This is something many of us have had to endure at some point or another. It's never an easy problem to answer as we are all so different. One thing, has he gone to your doctor's appt's with you? Maybe he needs to be educated on this. Seems he's being totally selfish with his 'needs'. What happened to your needs? I bet you need to be held and cuddled on every now and again without the fear of him wanting sex out of it, right? I'd make him read everything you can find on IC and VV and make darn sure he understands what torture you go thru every day.

Sex IS for both of you and only when BOTH of you want it. There will be times you will be able, will even feel like it at some point, but the way he is pushing you away he might be lucky to get it at all! He better learn what he's doing to you mentally by constantly making sure you know how bad off he thinks HE is.

I promise you things will get better in the future...you'll find the right combo of meds that will give you good days, and maybe more good days than bad.

Take him to the ICA's page if you don't want him to read here. I know you might want to keep this site your own.

Hugs, Sandy

[Claredale]

I agree with Sandy. My husband went with me to my first few appts because I was in such distress, plus I was young and had never been sick before. I had written everything down that was wrong, which at that time was freq/urg, pressure and the lovely retention. I am grateful that I have never experienced VV or PFD.

I posted this situation earlier, so sorry for the repeat, but for me sex was actually beneficial for me for the first few years of my life with IC. It helped me relax and made me sleep better. Believe me, I had my little secrets of taking my muscle relaxer and pain meds and drank lots of water, and after he was asleep, my heating pad was brought out pretty quickly because I was trying to minimize the pain for the next day.

When my IC progressed to severe, after 10 years, I wasn't so lucky. I still hid it, but I hid it by going into the den and crying because I was in so much pain. That is one of the things my pelvic pain doctor and my therapist help me work out. I had to talk to him and tell him what was going on. We had been married for quite a while by then, so it wasn't like we were newlyweds, but I felt unwomanly for so long because of my own fears. Once we worked things out literally we found a happy medium. We are able to have intimacy without sex when that was all I could handle. Just sitting watch a movie all wrapped up on a blanket was fine. We even went "parking" a few times just for the fun of it. We don't "count" days at all anymore. It's funny when I do know that he knows I am in a good mood and may be "receptive". He has my pain pill and muscle relaxer and a glass of water bringing it to me. What a sexy scene that is! LOL!

T83

[Becky Boo]

Hi ladies & thanks for all your kind replies & support. I have only taken hubby to one appointment & haven't encouraged him to read up on any of my conditions. I guess that's because I fear him actually reading that many of us have problems with sex when we have these conditions :o( not even sure anymore that he'd want to hang around! I have tried to explain things but he just seems to think I'm being self absorbed. Which I will openly admit I am! These conditions have had such a dramatic impact on my life as I'm sure it has everyones! From not being able to eat what I want to not being able to wear what I want :o( I'm sure things will get easier as time goes by & the life I know & love isn't so clear in my mind & I discover a new life for myself, but this isn't something that's going to happen over night is it? Over the past 4 weeks he's just constantly reminded me how long it's been since we've penetrated & it's just making things a whole lot worse :o( & yes Sandy you're right,I now even fear having a cuddle or showing any affection incase it's misinterpretated :o(
Sorry if I seem to be feeling sorry for myself but I guess I am at the minute :o(
Thanks everyone for reading, listening & helping to support me.
Big hugs
xx

[Want2BPainFree]

From the sounds of your posts, I think your husband is being very selfish. He should read up. Ignorance is not an excuse. He needs to understand everything you are going through. You could also tell him that oftentimes when women suffer from IC and vulvodynia, etc. etc. they are also prone to bacterial and yeast infections which can be passed to him, and then passed back to you.

My suggestion for helping the sex thing is to consider....and I don't know you so I don't know how receptive you or he'd be to it, but consider anal sex. Or, you could also consider getting him a male masterbating device such as a Fleshlight or jelly sleeve and you can use it together or he can use it by himself or whatever.

Beyond that, I can say my husband and I do not have a normal sex life and we ARE newlyweds. So you are not alone.

[Becky Boo]

Sonja thank you so much for that :) I have considered anal sex but just don't really feel ready for any of that at the moment :o( Just struggling to feel at all "horny". Never really had a high sex drive but since the meds & just being pre-occupied with research etc it's all been on hold for me, but given the circumstances I think I need to stop being so hard on myself! It will happen when it happens! I will deffo get my husband more clued up! I do feel that I have been scared to show him the whole picture but think the time has come!!!! Thank you for the info on the jelly thing as well, that sounds like it could be fun :evilsmile
Not sure how newly wed you are but congratulations :woohoo:!
Thank you for being honest about your own sex life its good to know I'm not alone!!!!
Big big hugs
xx

[Michelle in KC]

OK, so remember that I am NOT a doctor and I am NOT giving medial advice. Just intimate advice from someone who's been there:

Take an extra 1/2 dose of pain pill and anything else that relieves your pain and just fake it for a night. Been there, done that. Oh, bad pun.

You know, you can call your doc and tel them your symptoms and what you are "trying to sccomplish" and see what they recommend. It's much easier on hte telephone.

Good Luck. Michelle.

[Becky Boo]

Hi Michelle & thanks for that it sure did make me giggle :lmao: Now facking it could sure get it over with quick if nothing else lol!:lmao:
Thanks for the input & the giggle :)
Big hugs
xx

[jen74]

Hi Becky Boo,
I am sorry you are dealing with this. I also have not had sex with my hubby in over a year at least. I am in too much horrible pain to do it even. I try and make him happy by doing other things, but like you, I cannot tolerate being touched down there. Plus I am to prone to UTI's so I cant take the chance.
My husband is very understanding though, so I am lucky in that respect. He sees how much pain I am in and he understands. I love my husband and I know he loves me . I am sure you husband loves you as well and would not walk away from you over this. There is a WHOLE lot more to marraige and a relationship than Sex, that is for sure. I know it is difficult, especially for you. I know I miss having intimate relations with my husband, it seems so unfair. I have had to give up sex, chocolate, and coffee among alot of other things, most things that I love because of this stupid disease. I know how you feel, try and hang in there.
Jen

[Becky Boo]

Thanks jen & thanks to all the other ladies that supported me the past few days, you most certainly made things easier :)

I just wanted you to all know that I came home from a day out yesterday to my husband putting his loving arms around me & apologising for his hideous behaviour :woohoo: I could see by the love in his eyes that he was so disappointed in himself for the way he had made me feel. He admitted that although he knows I'm in pain he finds it difficult to stay tuned into this when there is nothing visible to see (thank goodness, but sure must make it hard for our loved ones)! He continued to tell me that I'm his world & our relationship is about so much more than sex :woohoo: & that he will wait as long as needs be & will continue to support me through these hard times. I'm sooooooooooooo relieved & feel so much happier :smile tee! Now I once again feel very lucky to have him :smile tee
Just wanted you to all know & hope this helps anyone else who is having problems to see that they do love us, it's just hard for them too.
Big big hugs to you all!
xx

[Michelle in KC]

Good for you Becky Boo! hehe. That rhymes.

Michelle.

[crkshnks79]

Hi ladies & thanks for all your kind replies & support. I have only taken hubby to one appointment & haven't encouraged him to read up on any of my conditions. I guess that's because I fear him actually reading that many of us have problems with sex when we have these conditions :o( not even sure anymore that he'd want to hang around! I have tried to explain things but he just seems to think I'm being self absorbed. Which I will openly admit I am! These conditions have had such a dramatic impact on my life as I'm sure it has everyones! From not being able to eat what I want to not being able to wear what I want :o( I'm sure things will get easier as time goes by & the life I know & love isn't so clear in my mind & I discover a new life for myself, but this isn't something that's going to happen over night is it? Over the past 4 weeks he's just constantly reminded me how long it's been since we've penetrated & it's just making things a whole lot worse :o( & yes Sandy you're right,I now even fear having a cuddle or showing any affection incase it's misinterpretated :o(
Sorry if I seem to be feeling sorry for myself but I guess I am at the minute :o(
Thanks everyone for reading, listening & helping to support me.
Big hugs
xx

Becky , you are not being self absorbed ! Your in pain and your world has been turned upside down , thats a lot to " get past " . Im the same way , Im afraid to cuddle or be affectionate because I dont want it to turn into something more . Im lucky though that my fiance understands and doesnt push the subject . Altho I dont think he totally gets the not doing anything ... he was reading up on IC and saw something that talked about " outer sex" for people who have pain after penetration , but I miss penetration so most of the time I dont even want foreplay because I want the whole deal , plus other stuff can irritate me to no end down there because of vulvadynia . Your not alone w how you feel , and no its not overnight but maybe the best thing is for you 2 to talk , maybe the result wont be something you wnat to hear but he needs to understand and also not communicating about it at all is only going to put more distance between the 2 of you . Im sorry you are going through this , I know its so hard . I hope the 2 of you can reach some sort of middle ground . I hope you feel better love !!

[anewday]

My hubby can be pretty self-absorbed too, so I understand. Ours wasn't with intimacy, but he couldn't understand why I couldn't get all the housework done and would lay in bed all day long.

I finally took him to several urologist appointments with me. At my post-distention appointment, my urologist told us that I had IC, that I had Hunner's ulcers and that it is a very painful, frustrating disease and could take a while to find the right meds/treatments for me. My doctor is VERY sympathetic and I think that really impacted my husband. He stopped referring to my "mysterious illness" as he used to call it and now will ask me how I'm feeling. He's even become the food police "honey, should you be eathing that?" and goes to get me organic foods. Men can be kinda funny. For my husband , the actual diagnoses and description from a doctor changed his view.

[judy45]

I would give sex a try (would you consider oral sex - most men LOVE that). We were having the same problem and I just finally gave in. I took a xanax about 2 hours before, lots of lubrication (plain k-y jelly) and foreplay and no missionary position (worst for your bladder. I took a long very warm bath afterward and yes, I was in pain and sex did hurt, but I faked my way through (it wasn't as bad as I thought). You might want to be checked for PFD and either vestibulitis or vulvodynia it sounds like you have some of those symptoms. I have PFD and Vest. (as do about 75% of ICers). Almost as soon as I started PT (for the PFD) and an estrogen cream (for the vest) I felt an improvement. I wont say sex is enjoyable at this point, but there is MUCH less pain. The anxiety you are building up will make it worse. Good luck.