Interstitial Cystitis (IC) Support Group
Interstitial Cystitis (IC) is a urinary bladder disease of unknown cause characterised by pelvic and intense bladder pain, urinary frequency (as often as every 10 minutes), and pain with urination. It is not unusual for patients to experience nocturia and pain with sexual intercourse. IC is also known as painful bladder syndrome (PBS), particularly outside of the USA.
I have had this for 4 years and only treatment I was given was antibiotics
long term but I didn't want to take them long term because I cannot take but a couple antibiotics, lots of allergies. I have alot of pain of course and irritation alot but it has really been so bad the past couple months. It
has really affected our love life tremendously, if you know what I mean? Is there anything that any of you have tried that has helped? Sometimes I find myself avoiding it because it hurts so much. Once I tried to talk to the Doctor about this and he just said that happens with this and that was it.
long term but I didn't want to take them long term because I cannot take but a couple antibiotics, lots of allergies. I have alot of pain of course and irritation alot but it has really been so bad the past couple months. It
has really affected our love life tremendously, if you know what I mean? Is there anything that any of you have tried that has helped? Sometimes I find myself avoiding it because it hurts so much. Once I tried to talk to the Doctor about this and he just said that happens with this and that was it.
deleted_user
I have a great doctor. They put me on the IC friendly diet and it helps me tremendously, I don't have to take the Elmiron that they usually prescribe for this...stay away from anything acidic (oranges, coffee, tomatoes, etc) do the diet exactly for one week and then you can introduce things one at a time for 3 days to see how you do. I no longer have the pain unless I've eaten something I should not have! Just google the IC diet. If you can't find it let me know and I can e-mail it to you. Good luck!!
deleted_user
My dr put me on hydroxizine, which is an antihystimine, and is supposed to help with the symptoms, it also has an anti anxiety affect (which I need:). I take it at night, and it seems to help me not get up as much. Hope this helps.
deleted_user
I'm very sorry that you have been in so much pain. I completely understand about avoiding sex. My husband and I haven't had sex in a very long time. It used to hurt during but now, it hurts afterwards. I had to take Vicodin and ice the area after sex. This helped a lot but it took me over a day to recover from the pain. I have been seeing a counselor for chronic pain and pain with sex for a long time. It has helped me a lot. Changing my diet has helped also. I cut out candy, chocolate, soda, and acidy foods/ drinks. Also Elmiron and DMSO installations worked in the past. I hope that you can find a good treatment for your symptoms. You are not alone, we are always here to help you. I hope that you feel better soon.
froggy1234
This is a horrible thing to have. I remember when I asked the Doctor from the start about Cranberry Juice and he said NO, it will only make it worse. I had been drinking it always for UTI's. I will look on the internet to see what I can find that I might need to stay away from, I have heard tomatoes are bad. Coffee will be tough because I am a big coffee drinker. Thanks for the advice !!
RascalFlattsFan
I wish all doctor's were more sympathetic to woman when they have pain during sex. My husband takes meds for severe eye pressure which makes his sex drive zero. Which is OK since mine is too. I haven't had to talk to my gynie about sex but I can tell I would get a crappy answer if I did. Now that's sad. I'm in constant pain and burning and I take Elmiron.. I'm trying to watch what I eat but I eat when I'm stressed, which is 24/7 lately. I thank God for a place like this, where we can share our frustrations and successes.
deleted_user
I'm sorry your in so much pain. diet and working out really help. Working out may sound like a terrible idea, but sometimes it'll make the pain go away if your having a flare. as far as sex goes, i totally know what you mean! I always feel so guilty n top of being in pain. My husband and I found that if I'm relaxed, I don't hurt as bad or sometimes at all. I tense up when I'm anticipating, and then I'm in so much pain. Find a way to relax first. Focus on a lot of foreplay... it helps so much!
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