Why does it hurt?

[Evea]

I was thinking about this the other day and I've been trying to find some answers.

I don't have pain when I have sex (unless it's a long session, then I have "friction" pain and I put an end to that!), but I always hurt the day afterwards. My pain feels like cramping and that my bladder is thumping. I use heat and that helps, but it does take a while for it to calm down. This pain happens to me the next day, no matter what position we use and I will have an increase in frequency.

Why does this occur? I mean, I know he's not "hitting" my bladder and in some positions he's not pressing on it from the outside of my body, so what causes it to start hurting?

I think if I could understand why, I could maybe figure out something to do to help the situation?

Thanks for your input on the subject.

[amaris]

Evea,
I cannot answer why. I can only tell you that when my IC was worse I'd always experience pain the day after, but not during sex, even if we used what I thought was a bladder friendly position.

Some things that I've tried that help reduce or eliminate the morning after pain include: using lubrication during intercourse, using a heat pad on my abdomen and an ice pack on my urethra right after sex, and taking an over the counter med, like alleve, for pain.

you may want to check the patient handbook http://www.ic-network.com/handbook/sex.html. it has some other suggestions and resources that may help.

amaris

[fireflicker285]

IC is a funny thing, and when you stir it up it gets ornery. I read that it is just the pressure etc. during sex that stirs up the bladder and brings on symptoms.

It is possible to feel like you have been run over by a truck after sex if you have IC.

I know I do.

Good Luck and be well.

[Evea]

Thanks for your replies. At least I'm not alone in this and just knowing that is somewhat of a comfort. I'll try the suggestions, I already do most of them...and I'll just pray that one day, it won't be like this for all of us!

:grouphug:

[blue]

You are not alone!

[gloriabono68]

I understand.............sex for some reason sets off my bladder as well............i think its more to do with the moving..........cause it doesn't matter what positions we use..........it still causes a flare or sometimes just hurts really bad........rarely do i get out of it not doing something.
Dr. Parsons on the handbook page lists sex as the number one cause of flares.............
But for me anything can set it off..........but i do know that after sex the urgency/ frequency gets really bad.....sometimes up well into the next day before it calms back down.

Chalk it up to yet another mystery about having IC.............
I hope they find something that works for all of us............and soon.........hang in there............

gloriabono

[Evea]

Thanks everyone for your replies. I tell you, I think this is the most frustrating thing about IC for me. I will give those who are just starting this journery, some hope. 6 months ago, I never thought I would ever have sex again. It just caused to much pain afterwards. But now, even though it's not smooth sailing, with a little work and open communication with my husband, things have improved and I feel that we are "getting" there. I just hope that time will help it all to get even better.

This site is just priceless, I feel that the things I've learned here have given me my life back and I know that finding it was an answer to my prayers.

I pray every day, that today will be the day they find a cure for IC.

Until then....we will get by with a little help from our friends!

[DeDe Kirby]

My favorite suggestion from my hubands grandmother was to drink lots of water and pee afterwards and that would get rid of all my bladder pain! Ha! People just don't get it. You hang in there. I have sex with my husband - sometime I admit I just get through it for him. Period. I do have pain immediately afterwards, but it worsens within 24 hours. My physical therapist gave me something that really helped however. A condom with ultrasound liquid in side. You put it in the fridge and then after sex you stick it up you know where. It hurts for just a second, but it seems to help the IC symptons. I also take pain medication after sex and a friend has told me that the use of an antibiotic afterwards has helped her lots! I have also used a TENS unit after sex in my bladder area and that seems to help. You know - I don't know if you have vulva disorders also, but the IC pain is so much worse than the vestibulitis (for me) that sometimes I completley forget it hurts in that area too!
Just some ideas for you - I am being very honest in saying that rarely do I get pleasure out of the act itself. Most of my pleasure comes from just being close to my husband. Maybe someday it will be different!

[gloriabono68]

I hope it will get better for all of us...........that they will find something that works for everyone .........otherwise we will all go nuts and our significant others too.........lol........It never really bothered me until this past year........this whole past year has sucked for the most part.....and sex has sometimes been hell during and afterwards.....but my fiancee is really great about it .....if i can't do it i just tell him......and he understands and doesnt worry .......Because i didnt tell him one time and tears were streaming down my face and he was like do not ever do that again......if u can;t u cant.......and when u can ....we'll make up for lost time..........HE is wonderful to me thru all of this.....i cannot believe he still wants to marry me , knowing it might just get worse instead of better......he has no idea how much the little things he does means to me........he even understands when i have days that i cannot go anywhere........I just believe someday theres going to be a cure and we are all going to get well and stop living in misery.........
take care.........email me anytime at gloriabono@yahoo.com

[DeDe Kirby]

Sounds like you are very lucky to have him and he is very lucky to have you. I keep reminding myself that having IC pain is just a little little part of who I am. I also keep reminding myself that having sex, while a large part of being married, is just one part. Like you said, when you can, you can and vice versa. Take care of yourself.
One thing I have learned through my pain is to have more sympathy and empathy for others. Perhaps there will be a time when he needs you to be there for him and you will get to repay all of his many kindnesses. My husband has recently been diagnosed with a severe case of diverticulits. We just couldn't believe it. He is young and is in excellent shape and health. However, I knew it was my turn to step up to the plate. I wish he never had to experience such a thing, but if it is to be so then at least he knows I have been through pain that does not go away.
Take care and email me anytime also.
DeedlyD@aol.com

[gloriabono68]

:toosh: oh sorry to hear about your husband .....my grandpa had that once and it was horrible thing to go thru..... My friends next door neighbors daughter has it and shes only 16 years old......its rare for younger people to have it but they can........I hope and pray he has a speedy recovery........i will pray for both of you......its all anyone can do ya know.......
and hopefully things will get better for all of us with IC>......i keep hoping it will anyway......i wanna give up somedays but then i am like......nope.........i cannot.......not yet........so.....i just take it one day at a time.......I am always here for my love , he went through some hard times this year........nothing health wise thank goodness but i was there for him just the same......he tells me all the time how he appreicates me beliving in him and not judging or critizing him..........so i guess things stay pretty evened out between us.........lol..........we can still laugh even during the hard times so i am thinking we will get thru anything that happens.......i am just hoping some good things will start happening for a change......i am so tired of having IC.......anyways.....email me whenever..........i am always here to listen......
take care
kristi ( gloriabono)

[DeDe Kirby]

I know what you mean about not giving up - I think about all the people out there that have a terminal illness or that can't affford a place to live, etc...and I think "who am I to complain, I need to be tougher!" But there is something about this disease that just wears you down. I'm so tired of hearing people call i urinary discomfort or just an general discomfortable feeling - I wonder if they have any idea of the pain that you have to endure when you have an attack. I don't like to complain, but I also don't want to be told I am merely experiencing discomfort. Ha! If the male urologist only knew. I am searching for a female this time, or at least someone who some idea of disease and pain.
You take care of yourself and hang in there. there is always something to smile about. I have had an ongoing attack for over a week now, and I am starting to wear down. but, like you I decided to be tougher and get ready to face another day.
give your sweetie a hug and a kiss!
Til next time!
D

[gloriabono68]

I know exactly what you mean..........."you just have to pee alot, how bad can it be"...........ignorence isnt always bliss people........
It would take a serious bout of either end of the IC scale for these people to "GET IT" and its probably never gonna happen......
I just do the best i can do........and it seems my flares last longer too these days......why? i have no idea....yet another IC mystery that drives me insane.......my whole system is just screwed up....my IC gets worse cause i cannot poop and then it gets worse after i poop for a couple days.......so either way i loose with the IBS going along with it.........I literally cannot seem to win for losing most days but like i said i try and remember it could always be worse and lord knows we don;t want that to happen to any of us....no matter how worn down and tired we get.......
THE BF talks about wanting to take me to the beach and all these other places and i am like......i wish.......but i don;t know if that would be possible........i cannot plan two hours ahead somedays ya know......
The last couple of days hasn;t went well IC wise so i am not in a good place right now........but it happens to all of us.......
I will talk to u again soon..........take care until then........
gloriabono

[BAM]

I feel good and bad when I read about everyones feelings about sex. I am older but feel terribly cheated. Only as of a year and half ago did I finally work through some major problems sexually.....these problems came from being molested at the age of 12. I had finally come to the place where I could have an orgasm and truly feel that it was OK to enjoy sex. I have been married 26 years so you can imagine how my husband felt about my change. It was great for about a year (except during that year I had numerous infections....mostly yeast)....then everything changed and I was dealing with something new....as I know now.....IC. I don't tell the docs about this because they are going to think the reason for my problems now is because of psychological probs. But I know that is not the case.....I still want sex but is just hurts so much. It hurts while in the act but I miss it so much I just go on anyway. I do ice afterwards and happened to have a pain pill around (my uro is not big on giving pain meds) and took it. I still paid a price....3 days of pain but before it was 5 days. I just keep hoping that somehow that part of my problem will go away or at least get much better. BEcause it is so painful it takes time for me to work up to it again. I am definitely going to try the condom with ice. My pain seems to be totally in the urethra.

[gloriabono68]

bless your heart honey...........its ok...........do not be ashamed......
IC takes its toll on all of us in different ways........and you might should mention it to your URO or get a new one..........I tell my uro all kinds of crap.....even stuff she doesnt want to hear......but i think its important for her to know ALL no matter how embarrassing or how big or small..........every article i can dig up medically about IC ......states over and over that SEX will make your symptoms worse........sometimes it hurts so bad when i have sex that i just cry the whole time its going on.........and after......but mostly it just makes me flare up and i have to pee every ten minutes for a few days.........or it burns really bad.......i know its personal and all of that.......but so far i havent found anything to help with the frequency on the days it bothers that.
usually my pain will go away in a few hours........but sometimes i think i would rather have pain than to pee every ten minutes......but i pee constantly anyway......i have very few days that i don't pee ......somedays i go every hour on the hour which to me that is a good day........and sometimes its only a few hours after sex that it happens.........and sometimes it doesnt happen at all.........i never know which one it will be.......its like spinning the prize wheel.........IC is weird itself............in general to me....so i understand.........I just never had good sex until now and i am reluctant to give it up.........wasnt abused or anything just never had good sex.......until i met my future husband........
but hes also very patient with me and i am sure your husband is with you also..........how long have you had IC if you don't mind me asking ??
anyway.......hang in there.........and pray we all get better.....its all any of us can do.......if u ever need to talk.......i am always here.
gloriabono@yahoo.com......
take care

[BAM]

I have had IC (diagnosed) since March or so. the doc nonchalantly said what I had was IC and that I could go on line to find out about it. He did say they didn't know what causes it. I thot nothing of what he said because he never said it was lifelong or that it would mean life long changes. I went for my DMSO treatments thinking once I was thru them it would be smooth sailing....just a matter of time till I was over all of this. So I didn't come to the network till about a week and half ago only to be put into a major depression when I found out what IC really is. Luckily I have gotten a recommendation to a urologist that is suppose to be very very good and so I now have some hope. I will have to drive about 4 hours or so but at least I will be under the care of someone who knows more than me and can communicate (those were the two criteria I had in finding a new doc....one that knew and understood IC and one that could communicate).
Anyway.....I have IC I beilieve for about a year or more. I now can piece things together. For months I had urges to go and kept telling myself it was all in my head since I had seen those commercials....gotta go, gotta go right now. anyway the urgency would not last more than a couple of days and then not reappear for maybe a month. What brought everything to a head was treating some infection and burning myself alive with the medication(or at least I thot that was all it was). I went on that belief for awhile until I realized the epicenter of pain was the urethra and that the burning was not going away. It has been since November 8th (the date is stuck in my mind) that sex has been painful.
BAM

[DeDe Kirby]

Hey ladies,
I was so sad to hear some of the responses but I feel stronger knowing that I have someone to share with also. Some other things I have tried with sex are antibiotics right after sex - I mean take two right when you get finished - Keflex is what I take. I also put on an adhesive heating bad (thermocare) and I drink lots of water. The icy condom helps alot. You guys hang in there. My attack is now going on 2 1/2 weeks - longest one in awhile.
I fully believe if your URO is not listening to you (especially about pain meds) you should get another one. I don't like taking them either, but on my word I am a tough gal that sometimes would not make it to work and through my day without them. Tell you doc to get over themselves - believe me if they had chronic pain and faced not working or not having sex with their spouses, they'd think differently. I don't have any patience with that. My brother is a surgeon, and at first he didn't listen to me. Then, when he began to read himself to what was happening to my body he had lots of sympathy and never questioned my pain again.
You all take care. We are stronger than this disease. WE ARE!!!

[MsSmiley]

Gloria, I had done the same thing you had, just hoping it (he) would be done quickly while tears streamed down my face from the pain. Boy did DH get upset & told me also to never do that again. This was way before I found out I had IC. He has been totally understanding since I found out I had IC, even before but moreso now. Along with DH seeing me at my worst in pain during flares my twin sister has seen me too & was the one who had taken me to the ER when I went down while at work. She had had a UTI the time I supposedly had one, I say supposedly b/c it turned out I had IC but at this time didn't know it, but she said I didn't have THAT kind of pain and she knew something else was going on. My mom hasn't been around when I've had flares but knows when I am hurting & she worries about me when I go to eat things b/c it is the weird stuff that gets me to hurting not the usual stuff. She has only read the phamplets that my Urologist gave me & the things I have told her. While at the festival where she lives Darlene & I had set up at my moms for a garage sale & the last night of the festival I had gotten me a tenderloin, wrong move, I got to hurting more than I had been all weekend long. My mom said I was thinking about you not being able to handle it & she was right.

For some reason I can handle coke & tea but I am finding out I can't greasy things, spicy & pepper. DH brought home a huge box of fish a month or so ago & we fried some & I ate one piece & it like to have tore me up immediantly. There is one Chinese buffet place we LOVE, come to find out I can't handle it either but can another place we go to occassionally. I mentioned this to the fill in nurse who did my DMSO a couple months ago & she said it might be from the sodium & the amt they use. So before we go out I pop a few Prelief in case we go somewhere to eat b/c of spices & all on foods & not really knowing exactly what is in or on it.

Sorry this is a book, I got carried away.

Mar

[gloriabono68]

No problemo.........i so understand............But luckily i have a very very very understanding future husband..........i swear sometimes i literally think he was GOD sent to me..........He is everything i dreamed about and read about in fairytales but never ever dreamed i would have in my own life........He knows what i need sometimes before i know it.......and sometimes he even stops to let me pee before i even say anything..........he just "knows" and that is sometimes scary.....lol...........He gets upset with me only when i start having a pity party and feeling like oh woe is me.....to which he replys that misery is still a choice no matter what the problem. Put a new spin on it i had never thought about. I have IC , it is part of who i am but its not ALL i am and to me that is the most frustrating part.........cause this whole past year it has had a hold on me that i can;t even get loosened up .
But i am refusing to let IC alone define me anymore. I deal with it on a day to day basis........somedays are better than others and some are hell and thats just the way it is........I too have to be careful what i eat and drink because i never know what will set it off. I have found that taking prelief does help ........cause sometimes you don;t know what kind of spices the meats or sauces have in them.......Preflief isnt a cure but i believe it does help somewhat........i need to get somemore i am about out of it.
I find i can pretty much handle kool-aid and water and thats it. Occassionally i drink some milk but milk doesnt always agree with my IC either....plus i have IBS on top of it so i have to limit my actual drinking of milk and i so love it.........I use to drink decaf tea all the time........but my URO took that away too.........unless i make it very very weak she said.........i sometimes still make it though because i just miss it so bad ya know........i start craving it. I rarely ever do any kind of soft drink unless its sprite or gingerale..........the darker ones do not agree with me.......so i rarely part take of those..........but of course it has to be decaf no matter what it is.......somedays i would kill for some cheerwine or dr. pepper and even chocolate........but Yoohoo is the only choc i can have.....and its not the same........i broke down and ate a little debbie choc cake last night but i will proabably pay for it later today........sometimes u just gotta give in........IC is so frustrating isn't it ??
Good luck to u in all u do and eat and always have prelief handy.......email me anytime....gloriabono@yahoo..........
take care
kristi ( gloriabono)

[DeDe Kirby]

Hey Kristi -
I guess you can have your pity party here girl. I agree with your significant other to some degree - I also believe you have to keep your spirits up. I know this is crazy, but keeping myself relaxed is a monumental to me feeling better. For instance, shopping at Coldwater Creek where they play relaxing music and have water fountains is much better for me than going to the mall. Isn't that crazy - just one example of the many things I try to control in my life so that I am not insevere pain. (I think its crazy that I even have to do that.)
However, sometimes the depression will just get to you. Feeling bad everday is bound to bring you down and no matter how hard you fight to stay up you are always going to have your bad days... The worst thing ever is feeling guilty b/c you feel down. Don't do it to yourself. Tell yourself you are allowed to have those days - I am not a shrink but just thinking that way helps me out sometimes.
You take care of yourself.
I always try to remember that although I love my husband very much, and he is terrific to me, he cannot be expected to understand everythign that I am going through. (Vice Versa is true also.) As long as we stand by each other, that is what matters. Sounds like you have that in your sig other. Good for you.

[gloriabono68]

Yes i have alot of pity parties on here......i don;t know what i would do without all of you and the new friends i have made from having IC.......GOD has a reason for everything......even what we don't understand. and i have come to believe that it doesnt matter what makes us FEEL better or what might seem crazy to others......all makes sense for those of us who share having IC. so shopping where u do makes perfect sense to me. I too try and stay as calm as possible cause if i dont my IC will flare even worse. I know allen isnt perfect and he knows i am not perfect but we have found something in each other that even i know is rare.....I have went thru hell and back literally to find him and i am not letting him go no matter what.
you take care too and i will talk to u again soon i am sure.......lol
kristi