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Hi all,
I've been suffering from IC for about 7 months now and while it's not a debilitating case i have some really awful days. I can go days where I have no symptoms and then something will set it off for no real reason.
One thing that I do notice sets it off though is when I have sex. I'll be feeling totally fine then after sex - next thing you know I'd have that UTI feeling for about a day or 2 where I need to go to the bathroom almost every hour. What's weird about it as well is that almost every time I need to go I have an almost full bladder and plenty of urine comes out even if I haven't been drinking a large amount of water. It's uncomfortable but not really painful. Just feels a little irritable.
It drives me crazy and makes me scared to have sex. I'm so worried this problem won't go away and that sex will continually make my IC flare up and not let it heal.
Has anyone else had this problem and have any advice? I'm actually currently single again and have been for a couple of months but have just met someone and am really scared that my problem with this will be an embarassing issue to deal with if things progress with dating this guy
CC
Matia asks this question at a
Matia asks this question at a patient's first appointment. Some people with IC do have pain after, and some don't. I was one of the ones that sometimes it would and sometimes it wouldn't. She would also ask me this at our monthly appointments. She would ask if my bladder hurt after intercourse. So I know it is an important factor in her treating your IC. She also talks about this on her dissertation. It's kind of complicated, and I don't remember what it said exactly. I will see if I can look it up and let you know.
Sorry I felt like I had
Sorry I felt like I had responded to this because there was another sex question.
I am so sorry you are dealing with this too. Since the beginning, I have noticed worsening after sex. I've had a few times that it hasn't but generally I do get worse. Mostly if I have an orgasm. I know this will eventually get better with treatment but it is still a very upsetting thing for me. I have a wonderful husband with whom I had a great sex life before IC. The good thing is we still really like eachother and where there's a will- there's a way!
So anyway- you are not alone. Hang inthere!!
Hi Deir, Thanks for your
Hi Deir,
Thanks for your message. Just wondering if you feel that with treatment it has been getting less painful? And out of interest how far along the line with treatment/IC recovery are you at this stage?
I've been starting to feel a lot better lately. Can go a couple of weeks with no symptoms sometimes before I get a little flare (often around my period). As I've been single a couple of months now it's been a little while for me now so I'm hoping perhaps it's better the next time around but then also worried it will take me a step backwards!
Hi MissCC, I had exactly the
Hi MissCC,
I had exactly the same issue... When my IC started, I had plenty of days where I felt pretty ok, not that bad, but my bad days always came after sex and like you, it lasted 1-2 days afterwards.
I dreaded having sex because I knew I would be suffering for the next few days. Sucked!!
Hey Natalie, Thanks for
Hey Natalie,
Thanks for sharing! May I ask if it's gotten better for you now after a few months treatment?
Also do you think it was something that put your treatment backwards everytime you had sex? Aprt from the pain afterwards I always worry that I should avoid having sex because perhaps it's inflaming the area more and slowing down the healing process if that makes sense? Or did Matia tell you anything otherwise?
C x
I aske her about thisand she
I aske her about thisand she said it wasn't likely making me go backwards. I totally get that fear. That was huge for me. So now I can let that go and decide whether it is worth it to feel worse or notbut not worry that I am making myself sicker.
IC and the single girl
Hi MissCC,
I totally hear you and I think your experience is pretty common. I lived like you for years and thought it was as normal as I would get- I wish I'd worked with Matia then! This is something that I really struggle with as an unmarried ICer. Like, how much do you tell someone about this when you're casually seeing them, or do you wait til you're serious, and then what to expect from them when you drop the bomb of "well....sex is kind of not the best experience for me...." Ugh!
I usually try to be as honest and open about it as I can from the start and if that person decides that they can't handle the situation, then I guess they weren't right for me, frustrating as it may seem. In my experience, people I've dated have been understanding and accomodating for the most part. On a positive note, I'm now in a long-term relationship that I started while my IC was pretty gnarly and we do our best to make it work, though it does concern me a lot about the minimal sex thing.
Best of luck to you with your new love interest! Oh, and my advice if you do decided to have sex is to be rested and as relaxed as possible before, pee right after, take a shower and then soak in a hot bath, and stay hydrated.
Thanks for the advice and
Thanks for the advice and your story ceb217. May I ask - has the situation improved for you at all pain/discomfort wise and is your IC on it's way to healing now?
:)
progress
Hey again,
So the sex situation is getting better but very slowly. Overall my IC is improving as well- again slowly. Little things get better and better and when I look back I am making progress, but it is very gradual. Sometimes, like Deir, I wonder if having sex and the anxiety that goes with it is holding me back from making faster progress, but it's tough to know. I'm glad Matia says it's not causing a problem (at least for Deir!).
Claire
Hi Miss CC- Areyou a patient
Hi Miss CC- Areyou a patient of Dr B?
I want to say first that everyone is different and that is ABSOLUTELY true. I havebeen in treatment for 15 months and no, this part hasn't improved. However- I deal withit much better now and we still have sex. I am not as afraid anymore and I make an educated choice about whether I am willing to feel worse or not. If I am having a bad day- I just can't do it. On a good day bladder wise I don't usually have any lasting issues with sex. It isn't ideal but I am making it work FOR NOW. I pray thatI will be free again like we used to be. I thought I was going to be a fast case and it hasn't turned out that way. I am not in miserable pain most days but I have had a lot of pretty bad ones. I think what happened with me is that because Iwas starting off more mildly than many I didn't have a big dramatic improvement and the herbs etc are stirring stuff up for me. I believe I am on the road to healing but there are times when it comes into my mind that I would probably "feel" better if I just stopped all the herbs etc. The thing about that is- I really don't know if that would be true and I would always know that I had stuff going wrong inside and who knows what would set it off worse- menopause? Stress? So unfortunately I am not yet a success story but I think we've made some changes recently that seem to have me on the right path again (although right now we are on vacation and I have been pretty bad:(). I feel a lot of things about not healing quickly- scared, surprised, disappointed, ashamed even and I often worry that I am scaring other people but I think it is also good to know what to expect. I am amazed that healing time does not seem to be directly related to severity of symptoms. Check back with me in a while and I will have a long, odd success story to tell! :)
Hi Deir, Thanks so much for
Hi Deir,
Thanks so much for sharing your story. I agree every case is different. I'm not yet a patient of Dr B as I haven't been able to make the trip overseas to the states yet. At this point I've just been reading up on IC a lot and trying to follow what I can online.
Out of interest, how severe was your case of IC to start with and how much has it progressed throughout your treatment? At this stage do you get much downtime as far as symptom free days?
It sounds like you have a lovely understanding boyfriend/husband! Lucky you!
I have no doubt that being fully healed is achievable for all of us! It's so nice to have this forum though and be able to chat to others and support each other
:)