sex and IC

[rhea]

OK- After talking with Babs the other day I am thinking we need to petition the sex gods for a reprieve when it comes to painful sex. I mean we all deal with this crazy disease called IC, which totally screws up our lives on every level so we think that we should at least have one thing that it doesn't disrupt and that is Sex. I miss having passionate sex with my husband without either pain with it or intense pain the next day. It is just unfair.I know, I am whining, but that is how I feel today. I mean we give up the good food. We give up the good drink. We give up having a pain free existence, couldn't we at least have romance? UGGHHH :cussing: . OK-enough, sorry, just needed to vent..(by the way, what brought this on is tried to have a nice romantic evening with hubby and I have been paying for it for 2 days now and it sucks)...

[tlacey]

You go girl. Thank you for putting into words, what I've been feeling for awhile. Before IC my husband and I had a very passionate sex life; now it's hit or miss. If he even thinks he's causing me any pain he stops. With everything else we IC'ers have to deal with we should at least be able to enjoy the closeness of being with the only other person who really knows all our ups and downs. We have tried soooo many positions, lubricants, etc. Sometimes it hurts right from the beginning, sometimes it doesn't hurt until it's over and sometimes it just sneaks up on me, the next day. :rant: I guess I'm done venting, but if someone has a miracle handy, let me know what it is. I'll try anything once. :help:

[Sarojini]

I'm with you!! I gave hubby some "birthday sex" on his b-day last night after we went out for dinner, and I am also paying today *grumble*

[Babs RN]

Yup Ms. Rhea, it is not much to ask huh? Just one night a year would be ok with me, would prefer more but am not picky.

Hugs,
Barb :grouphug:

[rhea]

Glad to see I am not alone out there with this. My hubby and I actually had intercourse the other night (usually we just "play") and I have a raring UTI right now. I am not greedy (well not anymore). Once a month...that would be heaven right about now. And as for Babs...you can only get it once a year when Chrissy comes home...oh but wait...he will be back and after being away from his woman for so long...uh oh...

[traceann]

Can I sign this petition too?? I once said it's the most unfair thing to happen to a girl who loves to have sex with her sweetie!! UGH!!!!

Hugs!

[bunnykinb]

I am in the same club. I can't even have an orgasm anymore for fear of pain. What used to be a frequent visit for lovemaking is not seldom due to my pain. Even if we use extra KY, it really doesn't help.

bunnykinb

[DebbieD]

You are right on Painful sex!!! Even with my Bladder out it still Hurts. He says I do not love him anymore. I do but I want him to love me also. I can not enjoy it if i am Tears.

DebbieD

[tigger_gal]

I double, triple, quadruple agree that pain is the the worse induced flair and pain......
pass that petition over so I can add my name to it.

[karenmay]

Hello. I am new to "IC". I was diagnosed last week (Nov.17). I am married (8+years) to a very loving and thankfully -understanding husband. We used to think we may try to have kids in the next couple of years. Those dreams are now shattered. I'm afraid to get close to him at all.
I feel so alone.
I am so glad I found this webiste/network today. You all seem so supportive. I hope I can get to know you all well, and maybe you can help me. The doctors can't give me anything for the pain or any medications at all until they remove the tumour they also found last week.
My surgery is not until Dec.06.
It feels like eternities away!

:help:
thank-you

[vm]

:welcome: Karen. Don't completely give up hope on sex with your husband just yet, OK? Many of us out here do find ways to have pain free/flare free sex. It often takes experimenting with different treatments, different positions, and lots of lube and a gentle start. Don't give up hope just yet. :kissing:

[dyno]

Karen, I also wanted to add my welcome and words of encouragement. Kim stated my feelings exactly and I second them.

[karenmay]

Thank-you all. I have new hope after talking to you guys. The chat room tonite was very helpful too.
One day at a time -right?

good nite
karen
:grouphug:

[cindysd18]

It seems kind of unfair when you crave sex like a person without IC and can't enjoy it to the same extent. I don't think I will ever climax in bed-haven't yet. Relaxing baths help to reduce frustration. Does anyone have any tips on how to climax in bed with IC?

[jgandy]

I'm so glad that I'm not the only one that is afraid to have sex! I usually burn badly right after and have pain the next day. Is there anything that can be done about the pain to relieve it. Sometimes I don't hurt at all, then other times I can barely move. I'm about to be in my prime and I don't want to miss out!

[ICB]

There are many self-help tips, prescription medications, and physical therapy that can help IC patients with painful (before, during, and/or after) intercourse.

Our bodies have a guarding instinct and we tense prior to intercourse because we expect pain. This, in addition to Pelvic Floor Dysfunction (if you have it), can lead to painful myofascial trigger & tender points to develop in the vaginal muscles - which cause us pain. In addition, unexplained inflammation may set up and cause us pain, frequency, buring, etc. in the following days after.

I know that I've offered this before, but for those new to the group :welcome: - I run a support group and have several hand-outs that were prepared with input from various physicians, nurses, and physical therapists. If any of you are interested in a copy, please email me privately at icrelief@verizon.net and I'll be happy to email them to you.

I suggest that you consult with your healthcare provider if you believe that the information above may be helpful; your healthcare provider will determine the appropriate treatment regimen for you.

The contents in this post are provided for informational purposes only. The contents are not intended in any way to be a substitute for professional medical advice. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding your medical condition.

Best wishes to all, ICB :flower:

[rhea]

ICB-thanks for the tips...I think the best thing we can do is pass what little knowledge we have on this crazy disease on to others...I have been dx'd now for 17 years and I think I started this crazy thread just to vent out that even with doing all the right stuff sex can still hurt like he&& afterwards and I didn't think it was fair. I am lucky my hubby is very understanding. When ever he gets "moody" bout it I tell him..ya know you just need to thank your lucky stars that you had 7 years of really AWESOME sex before we got to this point...lol. And for everyone else-yes this petition is still on the move.

[tigger_gal]

welcome karen.. glad you found us..

[traceann]

Hi Karen!! Sorry my hello is so late, ugh!

I can remember at the time of dianosis (when my IC symptoms were RAGING, lol) sex was the one thing I started to mourn the most, it was a toss up between food and sex as to which one I was decidingd I was going to miss the most, lol. I really thought I would never have a normal and enjoyable sex life again...which in itself was depressing, as my sweetie was the first person I truly loved to have sex with. It was like I found my "sex" soulmate, lol. And then "whammo!" all gone... BUT, I was very mistaken!! :woohoo:

It was just something I had to "avoid" for awhile. Once things started to calm down, between the meds and the diet, we started out very slowly. Just cuddling, touching etc. Then we'd take it a little farther and then a little farther etc. Finally the day we tried actual penetration, I was a bit nervous - it'd been awhile and wasn't sure what it was going to feel like or what repurcussions I would suffer. :hmm: But since we did it the way we did, I was fine. It was fine. It honestly was even better than pre IC, :biglaugh: Lots of foreplay was the key and lots of relaxing activities, like massage etc.

Another key to good great sex (I am being positive here,lol) is communication!!! That is numero uno!!! Without it, I would say don't even bother. :biglaugh: It wasn't easy at first for me to discuss it with my sweetie (funny I could talk about it easier with my girlfriends!), but once we did, we were on a communication roll!! It was great, and I realized we should have done that long ago - even before IC!! :bonk: There are many positions to try to minimalize the bladder woes, etc. Just don't be afraid to talk about it!!

Also, to make sure that there was not any miscommunication for lack of a better term, I made sure hubby knew that he was loved and desired regardless of what I was able to partake in. I would have "just him" nights. Where I would just focus on him and please him. It helped to keep the closeness and intimacy between us and let him know just how much I loved him and desired him, even if my body wasn't cooperating at the time. It kept me/my body happy, and it kept him happy. It was hard at first for him to just "recieve" he felt guilty, but I explained to him I had NO problem with it, and he finally was able to relax. :kissing:

And the other HUGE helper - a good quality personal lubricant, regardless of whether or not you think you need it! ;) It helps reduce friction, that could possibly set the bladder off, lol

Hope this info helps a little bit!!!

Hugs!

[karenmay]

wow! Thank-You Traceann. I really do feel sorry for my husband right now. So that sounds like a great idea to have (just him nights) :)
It sounds like there will be hope for the future...it just feels like forever since we've been able to be intimate at all!
Luckily, he loves me very much and has been very patient.
Yeah.....just communicating with him that I was sad about us not being intimate right now was a HUGE step for me. I bottled it in for so long and just kept making excuses why I didn't want to make love with him. :rolleyes:
He thought I was mad at him or something. (he didn't know that IC made sex painful). But since he understands that now....he's learning to live a new life with me too.
This is definately something you can't do alone!!
I'm so thankful I'm not alone.
thank-you soooo much!!!!

k :) :) :)

[trytosmile]

Add me to the list. Got a little nooky this morning and paying for it now...UGH. Your right why can't we have just one thing.

[basia]

I have been married for 2 and a half years and I have been suffering from IC for 2 years now. I miss making love to my husband! I completely understand how you feel. I would like to start a family soon but how am I supposed to get pregnant? I am so fortunate that my husband is so understanding but how long? I am worried about our marriage that it will affect it in a negative way.

[karenmay]

Basia:
Hi. I know of your frustration. I have only had IC for 4 months now, but I know of the "missing making love" that you and your husband feel.
I can't promise you that your marriage won't suffer, but I can encourage you to not think of such horrid thoughts. If your husband has been with you this long, and you 2 really are in much love, your future will be bright!
I don't know what my husband and I are going to do about a family yet (maybe we were'nt meant to have kids) (or maybe we'll adopt). But I do know that we have established a new marraige -full of hope,understanding,love and patience.
Sex isn't everything. :shake:
This is hard for me to say (I haven't felt long term affects yet). But I just had to send u some encouragement.
Hope to help :)
Your health comes first! (my husband asked me to say that too!)
:flower: :flower:

[Cheries]

This sex thing is such a hard thing to navigate. I love to have passionate sex with my beautiful hubby but feel like I am afraid I will pay for it somehow! NOT FAIR I lament to the gods! One thing I started to do was take a macrobid with sex and it helps me to avoid infection. I also try to keep the actual intercourse short. But....what else can you do? I know we would have it more often if I didnt have this IC ribbon around my neck!

[Babs RN]

Rhea for President in 2008! :bow: ;) :flower: :evilsmile :kiss: :dance: :D :bunny: :bunny: :bunny:

[traceann]

You are so welcome karenmay!! :) I know, my sweetie and I were just married this past June. We've been together a total of 3 years, so he was here for the beginning of it all. It was tough in the beginning. I forgot he had feelings too, lol. I mean to say, he'd get forgotten in the shuffle - that he missed our old sevles, and had frustrations that I was sick and he couldn't do anything to help, he missed making love, etc. And usually, it came out all at once in a stupid arguement about something else, duh. Heaven forbid he just talk to me about it, lol. But usually once he vented and got it out of his system, we moved forward again. It's definitely something that affects both people, it's like you "share" IC, lol.

But yeah, once we navigated the sex/intimacy issues by just flat-out talking about it, it was good. He too thought it was something wrong with him, that I was either mad, or not attracted to him anymore, etc. Poor guy!! ;)

So, just keep positive, and be patient.... :)

Hugs!

[itzbezzy]

*hugs to everybody*

oh, my holy goodness. yeah. i don't have a boyfriend at the moment (my on/off boy of 5 years lives in boston and i'm in az, so, yeah) but one night i decided to try a toy during phone sex (hey, a girl's gotta do what a girl's gotta do sometimes) and it didn't hurt at all at the time; i didn't even think about it until about a day later when i tumbled into the most excruciating near-week long flare. and the scary thing? it was a *small* toy too. not anywhere near actual sex. he wants me to visit for new years, and, eek. *is scared*

perhaps i'll say 'hey, okay, fine. we can have sex if you hook me up with vicodin.' lol

[Hollydoll85]

I'm signing that petition too. Blah.

[traceann]

itzbezzy, how long have you been diagnosed and on meds?? For me it was the worst at time of and around diagnosis. But, as I have gone along it's really back to normal, and I have no problems anymore, just maybe an occasional "irritated" feeling, but that's it. I can remember just orgasm and not even penetration could kick-start a bladder tantrum!! LOL ;) Alot of times, thanks to tips I learned here, I would keep a cold pack by the bedside for afterwards and I'd even take some AZO Standard or Uristat before getting frisky... Those things helped a ton!!!

Hugs!

Hugs!

[bellaluna05]

I can't believe I didn't see this section before! I have been so freakin frustrated for so long now!!! Growing up I wanted to wait till I was married, even though I am an insanely sexual person(I am a scorpio afterall) I always just really wanted to be with one person, my husband, and have lots and lots of wild hot sex with him. Unfortunately my plans were unvoluntarily ruined, starting in my late teens I experienced a lot of sexual abuse from a few boyfriends. When I finaly thought I met he man I was going to marry(I was very wrong but..) I decided I needed a good experience with sex after all of that and tried to start my sex life with someone I really loved for the first time at 23 or 24 just to find out that it was too painful! Way too painful! I was horrified. I have had mild sometimes moderate IC symptoms since highschool but didn't know what it was yet and didn't know that it was going to ruin my sex life before it ever started. After a few more failed attempts my IC became severe and I was diagnosed, I always wondered if my rapes were the cause of this horrible monster, but couldn't find any other ICers that had been through the same thing. Plus there are so many other possible causes for me. Anyway I am rambleing.
I am so scared now that I will never get to experience good sex or even sex at all since it hurts way to much to ever try. I now am with the real man I am going to marry and he is a true Angel, because he gets nothing from me and he is still here and extremely supportive! We have been together for a little over a year and even though we tried a little at first we can't even fool around now, no making out even, nothing, it hurts me just to get turned on! If I do I feel like I am being castrated. It is so frustrateing to say the least! I am always so scared that he will leave me, but he never even complains. I am about to have my bladder and urethra removed in Jan. and I am praying so hard that after that I will finally be able to start my sex life, in my 30's, with my incredable, beautiful man. Please pray for me! I should get to have great pain free sex at least once in my lifetime right?

[karenmay]

:welcome:
Hi. I am so sorry for all the pain you have been through in your life.
I will definately pray for you and your upcoming surgery. It sounds like you really are with an angel. :)
I know exactly what you are talking about when you say the pain comes even when you get turned on!!
That happens for me too. :mad:
My husband is frustrated and sad....but we had a shower together last night and were able to just enjoy each others company. Plain and simple.
I don't have to hide in a corner after all.
We just have to take every day one day at a time.
Wishing you all the best.....

karenmay
:bunny:

[Jessi3377]

I have been hurting for almost 3 weeks now from having sex one time with my husband. I actually started hurting during sex but didn't want to say anything to "spoil the mood", bad pain afterwards. I've had symptoms of IC for 19yrs. but am new to the diagnosis. Do people usually suffer this long from one night of sex? I hope I get better soon!!!

[ICB]

Yes, in some cases it sets off a flare that can last a long time. The flare is usually due to inflammation; however in some cases it could be from an infection. I suggest that you go to your healthcare provider and have a urine culture done to rule that out. Dip-stick tests are not that accurate, insist on a culture.

If the pain is due to a flare-up rather than an infection. Inflammation and/or myofascial trigger and tender points are usually responsible. Ask your healthcare provider if you can take over-the-counter anti-inflammatories; ask if he/she can prescribe physical therapy; and if you are not already on something like Atarax or Vistaril (an antihistamine) ask if that would be appropriate for you (it helps to stop mast cells from releasing histamines into the bladder that cause the inflammation).

I suggest that you consult with your healthcare provider if you believe that the information above may be helpful; your healthcare provider will determine the appropriate treatment regimen for you.

The contents in this post are provided for informational purposes only. The contents are not intended in any way to be a substitute for professional medical advice. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding your medical condition.

Best wishes, ICB :flower:

[marsi4]

I haven't done anything in 8 months. I have pain regardless. I don't need something to trigger my pain. It's there all the time.

Marsi4

[jimmiesgirl]

OK- After talking with Babs the other day I am thinking we need to petition the sex gods for a reprieve when it comes to painful sex. I mean we all deal with this crazy disease called IC, which totally screws up our lives on every level so we think that we should at least have one thing that it doesn't disrupt and that is Sex. I miss having passionate sex with my husband without either pain with it or intense pain the next day. It is just unfair.I know, I am whining, but that is how I feel today. I mean we give up the good food. We give up the good drink. We give up having a pain free existence, couldn't we at least have romance? UGGHHH :cussing: . OK-enough, sorry, just needed to vent..(by the way, what brought this on is tried to have a nice romantic evening with hubby and I have been paying for it for 2 days now and it sucks)...
Amen to that ten-fold!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

[rhea]

:loco: :biglaugh: :loco: Babs is a nut..Rhea for president...That would cause so many problems in the world. First I would replace all the ruling men with women...because as women we could talk all the problems away instead of playing army...(just a joke, please no nasty responses). Oh and still got that petition going..haven't had good nookie in so long I think i have become a Virgin again... :biglaugh: :biglaugh:

[traceann]

LOL, I think replacing the men with women is a great idea!! LMAO!!! Only we ICers can have "spontaneous re-virgining"... :biglaugh:

[basia]

Not only I can't have intercourse since it's too painful but when I get turned on I get this horrible muscle spasm "down there". It feels like a cramp in my vagina. Is this type of pain related to the IC? Does anyone else experience something like that? I have not done anything in over two months. I miss it but it's not worth the pain. I feel sorry for my husband. I am glad that he is being understanding and very patient. I am 29 years old and I feel like those days of "passionate love making" are over. How do you ladies deal with it? I am not saying that sex is the most important part of the marriage but it is a big part of it. I know that it brings you closer to your partner and nothing can replace it.

[jimmiesgirl]

Not only I can't have inercourse since it's too painful but when I get turned on I get this horrible muscle spasm "down there". It feels like a cramp in my vagina. Is this part of the IC? Does anyone else experience something like that? I have not done anything in over two months. I miss it but it's not worth the pain. I feel sorry for my husband. I know that he is being understanding and very patient.


Hi Basia~ I was feeling so bad for my hubby, we have gone nearly 2 months with no "intercourse" and I must admit even though I am in pain 24/7 I miss the closeness only intercourse can bring so last night I tried the advice that another IC'er on here gave on having sex and it worked and all went pretty well but today I sure am paying for it!!!!!!!!!!!!!! I am hurting like mad!!! Sometimes when I get sexually excited I get cramps or shooting pains in and around the whole urethral area.

[karenmay]

Hello. :)
Yes, that pain is definately what I experience as well. My husband and I haven't had sex in MONTHS!!! But I was able to get turned on the other day without the "pain". I hurt the next day for a bit. But it wasn't excrutiating. I think that once you figure out your "good" days and "bad" days you can start trying new things.
I know that I am in my "good" time right now and I was even able to bike ride at the gym today -for 1/2 hour!!! That was a HUGE accomplishment for me.
:woohoo:
But still not anywhere near where I was at before all this came on.

oh well.
one day at a time. right?
:grouphug:
karenmay :flower:

[emmiep]

My fiancee and I just tried intercourse today for the first time in two months. Before that, we were having sex almost every day. I will say that after reading this board and getting ideas about how to approach sex, I felt more comfortable even before I took my clothes off. For anyone new out there, this worked for me:
*Tell your partner what feels good, or when to stop.
*Discuss other foreplay methods and spend lots of time "pleasuring"
*If you attempt penetration, go slow and if it hurts STOP
*Don't feel bad if it doesn't work one day, try again when you are ready in another position
*Talk to your partner about achieving pleasure without penetration
*Urinate after any intimate contact!
*Be careful with lubricants (for me, Astroglide and KY made the burn worse)
*Try to relax

[traceann]

Hee hee, way to go emmiep, and thanks for posting!! The tips can never be said enough!!! ;)

Hugs!!!!!

:)

[vickisue]

i read all the posts with great interest.
i have been with my husband for 11 years. but my IC has gotten worse and worse over time. we used to have a very active and fufilling sex life,but not now. what i have found is that BECOUSE anything involving sex causes more pain for me, it has finally gotten to a piont where i am very aviodant and have become uninterested in sex. i do things to please him ,but i get no enjoyment out of it,OR rather,i am scared the whole time i WILL get enjoyment out of it,(in which case,my symtoms will be worse)!
i feel so bad for my husband,especially when i think irrational thoughts (like wishing his prostate would have problems,so his sex drive would not be an issue!! or wishing i was single,ONLY so that i wouldn't have to feel so guilty at being mostly asexual at this piont in time!
i never would have guessed i would end up this way(shying any from sex),but here i am anyway!
yesterday he joked around that he was growing a beard in protest to our lack of a sex life,but i took it personally.
i just wish i could enjoy myself again!

[lauraads]

I'll share my two cents worth because I think it is wonderful we are each getting to vent here! This is such a frustrating topic. I've been married nine years and since my iC went out of remission again 10/04, even when I feel good the sex thing is a huge mistake. I feel so bad for my husband. I feel bad for myself. It's been four months! When I feel good I don't want to do it and feel bad, which makes me feel guilty. When I feel bad I think, why didn't I when I felt good?

I think equally frustrating is that even any external manipulation (I'm embarrassed to say this) that leads to orgasm leaves me with a flare the next day. How unfair is that??? I mean it's a tension reliever!

:headbang: Laura in Florida

[ICB]

For those of you that are experiencing pain/burning/frequency/ect. after arousal - there is a theory that it may be caused by mast cell degranulation. Mast Cell Degranulation causes the release of histamines into the bladder/vulva/vagina, which causes inflammation and in turn causes our symptoms. Ask your healthcare providers about this theory and ask if they would recommend a mast cell stabilizer like Vistaril. Moreover, you can also ask if an anti-inflammatory would be appropriate for you.

I have tried quite a few things. I've found that the things that work the best for me are:

* Valium 2mg 1 hour prior to intercourse,
* Warm compress to relax the pelvic muscles prior to intercourse,
* Cool compress after intercourse to help reduce burning and inflammation, and
* Taking an anti-inflammatory pill such as Motrin for the next couple of days.

I discussed these options with my urologist and gynecologist and when they gave me the "thumbs-up" sign, I tried it and it's been extremely helpful.

DON'T FORGET TO CHECK WITH YOUR HEALTHCARE PROVIDER FIRST!; your healthcare provider will determine the appropriate treatment regimen for you.

The contents in this post are provided for informational purposes only. The contents are not intended in any way to be a substitute for professional medical advice. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding your medical condition.

Best wishes to all, ICB :flower:

[vickisue]

I went to see my urologist 3 days ago.She gave me a prescription for URELLE ,to use if my symtoms get bad.Has anyone had experience with this med?
It is supposed to turn my urine blue,and I just read about the side effects,and I guess there is a significant chance of GI upset(?)
I am altering my diet dramatically,and am hopefull the elmeril will be successful!Afterall,I already have sacrificed the appeal of my right butt check (over to one of scar tissue ,due to installation of an interstem device 12 months ago.)Shouldn't that be enough compromise? I wish!Just give me back my lost libido,one without IC thrown in the mix,for once!
has anyone ever wished their spouses libido would dissapate,so they would have to feel so quilty /defective?

[traceann]

LOL, vickisue, I bet there are more than who are willing to admit that they have often wished that!! Unfortunately, I think mine stuck a bit too much, now that I have been able to resume our sex life the way it used to be...he's the one I have to bug to get in the "mood", argh!!!!

;)