Interstitial Cystitis

[emasella]

I am a 30 year old female diagnosed 7 years ago with IC Until recently my symptoms included frequency, pelvic pressure, urgency, slight retention and nocturia. It was usually quite manageable except for an occassional flare up. I took Elmiron and Amitryptyline as well as Prelief occassionally. About a month ago, I began dribbling urine. It started after I had a bad yeast infection and was experiencing increased frequency as well as burning around the urethra and vaginal area. I thought maybe I had a UTI but my gynecologist and urologist both said nothing was wrong. The frequency and other symtpoms have returned to a much more usual state, except I am still experiencing dribbling of urine throughout the day and burning between the urethra and vaginal orifice, sometimes worse after urinating. My urologist didn't seem phased by this, dismissed it as "normal" and prescribed Sanctura. I haven't seen much help so far (some days are worse than others) and worry that Sanctura will make my retention worse after long term use. I also haven't read any where (done much research on many, many websites) that dribbling or incontinence is a symptom of IC Has anyone else experienced this? I can usually deal with this disease, but I do not want to go through life smelling of urine. I am starting to get very anxious and depressed.

[ckw1205]

Thank goodness I found you!!! I am a 34 year old who was just dx last week with IC. Just started taking Elmiron and I feel so upset over all of this. My symptoms just started about a year ago and I have had the dribbling for about that long...it is TERRIBLE and is starting to make me feel depressed and more worried about all of this...we are too young to be peeing on ourselves! I too told my Urologist who is new since I just recently asked my PCP to refer me to someone...he didn't act like it was a big deal, and didn't offer any help. I am just curious as to why there aren't more people experiencing this and if we need more eval to see if there is something else going on. I am an lpn and that just makes it worse, b/c I have scoured over every site I can find to look for others with similar issues, and I just haven't been able to find many. Also, I am looking over my cysto pics, and I don't see the ulcerations or other mentioned areas on mine, just the vessels...what do yours look like? Have the meds you've taken helped much? Do you have a lot of the burning and nocturia? I once started counting at 130am and went 27 times til about 5am, needless to say; I was up all night! Do you have any of the associated conditions? I see the IBS is one and so is food allergies...I had gastric bypass 11 years ago, and am wondering if this is related b/c I have had nearly the same symptoms as IBS after the surgery...
Just wanted you to know you are not alone, and I will be praying for you too. Hopefully they will find more effective ways to treat this soon.

[emasella]

I seem to have gotten the dribbling under control most days. My doctor put me on Sancturra, which is something usually prescribed for neurogenic bladder, and it seems to help. I have also been watching my diet a lot closer lately and taking more Prelief. I have all the other usually symptoms of IC but have most under control usually until a flare up. Right around the time the dribbling urine started, I also started experiencing terrible burning in the vulvar area between my clitoris and urethra. I don't know if I am now developing vulvodynia, or it is due to irritation from the urine, but nothing seems to help with this. This is what I would say is the biggest problem I am experiencing at the moment, as it is starting to affect my sex life and my relationship with my boyfriend. I have been to the uro and the gyno and neither can find anything wrong. The dribbling has been better lately but if it continues I will continue to persue it as I have been told by many people this is not a symptom of IC. That really worries me and I have no idea what else could be wrong. As you said we are way too young to be incontinent. Might I suggest you visit a new doctor if this one is not helping?

[ckw1205]

I will try the Prelief and ask my md about the other one for the dribbling. My PCP is wonderful, and just referred me to the Urologist...who was the unfriendly one...I will give him one more chance and then find a new one. I just had my cysto done last week, and my follow up appt. is next week, so if he doesn't give me the time to sit down and talk with me it will be my last visit with him. As for the burning in the vulvar area, I have that too. Primarily just an extremely high sensitivity around my clitoris. It is pretty miserable when it flares up. I have been taking the pyridium and a lot of it too. The Uro gave it to me after the cysto, so I will ask him what I'm supposed to do if the Elmiron doesn't work. Have you tried any of the antidepressant category drugs? I'm wondering if they may work for the dribbling too b/c they work with the neurogenic aspect. So, did your Urologist say that the dribbling was a s/e or what? Mine hasn't addressed it at all, so I plan on making that the highlight of my discussion on Thursday's visit. I'm sure the vulvar area burning we are experiencing is due in part to irritation from the urine, mine even smells like straight ammonia sometimes, and that has to cause tissue damage. Have you read the Peggy K story on this site about the long term antibiotic use and her cure with it? I plan on trying to print that off and take it to my PCP. He is a family friend too, and I think he would help me try that route if he thinks there's any chance it will help. Do you have a hard time sleeping at night with the pain (mine seems worse at night, and the nocturia definitely interferes with sleep). I have been taking a lot of pain meds to sleep and I am getting concerned about that...don't want to become dependent. It's all so depressing if you sit and dwell on it, I am married; and my husband is ok with things now but if it gets worse I can see where it could be VERY trying on any relationship. I also hate not being able to look forward to doing things I used to b/c of the pain and frequency...I will keep praying and you stay in touch as will I if I find anything new.