Oh you poor thing. I've had IC for about six years, without lesions, and for the first few years my bladder pain was constant with no relief after voiding. Main symptoms are bladder pain, constantly feeling like you have to go to the bathroom, which can also affect sleep, and pain/burning when urinating.
DEFINITELY get another opinion. Look for a urologist who specializes in interstitial cystitis - like ME/CFS, IC is still not understood well and there are plenty of urologists who don't know how to diagnose or treat it. On average, it takes IC patients 1-2 years to be diagnosed properly (for me it took a year and a half and three urologists to find one who could help me).
Again like ME/CFS, IC doesn't have a clear-cut protocol for treatment. There are some medications that sometimes work for some people; you may need to try a lot of things before you find what works for you. Here are some non-prescription methods that may help in the meantime:
- Heat pads: These work better for me that anything else. Get a heating pad and put it on your pelvis, or right between your legs. The heat soothes the pain and even makes the urge to pee not so bad. I use an electric heating pad at home, and sometimes use disposable heating pads if I'm at work or out and about. (I use the Thermacare heat pads designed for neck and shoulder, and put them on my lower pelvis.)
- Diet: Most people with IC have food triggers. Try to avoid anything that's high in acidity, citrus, coffee, alcohol, and chocolate. There's a good overview of bladder-friendly foods
here. I was skeptical of the food thing until my IC got so bad that I was desperate. I completely eliminated everything on the Bad food list and noticed a real difference. Now that my IC is better, I've been able to incorporate more of these foods back into my diet, but I still have to be very careful with fruit and chocolate to avoid a flare. Do NOT drink cranberry juice. It can help urinary tract infections so some people try to push it, but the acidity is horrible for IC.
- Phenazopyridine (Pyridium): This is a pill that coats the bladder lining and helps with the pain. Once you find a good urologist, ask for a prescription. In the meantime, you can get a lower dose over the counter - Uricalm and Azo are two brand names, but check the box to make sure you're getting phenazopyridine. As a fun side effect, these pills make your pee neon orange!
- Condom pops: I got this idea from my pelvic pain physical therapist. Take a non-lubricated condom, fill it water, tie it off in a knot, and freeze. When your pain gets bad, stick it in your vagina for one minute. It decreases inflammation and can help with pain, especially after sex. I always keep one in the freezer.
- Cushion/heating for sitting and car: A lot of people with IC have pain when sitting down, since a chair presses rights against an inflamed, sensitive area. We tend to be very sensitive to vibrations as well, particularly in the car when your nethers are pressed right against a vibrating seat. (I can't be in the same room as loud music and pulsing bass lines.) I've used one of
these cushions in the car. It was specifically designed for IC patients and has a whole in the middle to avoid contact. It helped me a huge amount for car rides. Now my car has heated seats, and the constant heat helps a ton.
For me, the one thing that helped the most was going off birth control pills. All of a sudden, my IC got MUCH better. It was very severe, and It's now it's mostly just annoying, as long as I'm careful with diet/lifestyle. That's definitely not normal though; most IC patients tolerate birth control pills just fine.
The best thing to do though it to find a good urologist who knows IC and really cares about your pain. If your urologist isn't helping you feel better, you need a new urologist. Keep looking, and don't give up!
For more info, I highly recommend the
Interstitial Cystitis Association and the Interstitial Cystitis Network
forums.
Edited to add two more things I forgot:
- Prelief: Prelief helps counteract the effects of acidic foods. If you do eat foods that aren't good for the bladder, this can help you avoid some of the resulting pain. Available online or through the IC Network store.
- Desert Harvest aloe vera
tablets: These help decrease inflammation and can help when bladder symptoms are flaring. I keep some on hand and take them when my bladder pain gets really bad.
