OM Goodness! Where were you when I was going through all of this too?! Glad I found you now! Like you, I also have IC, endometriosis, possible Celiac, and TMJ. I've done a lot of research on all these conditions. IC and endomet. are called the "Evil Twins," which means if you have one, chances are, you're bound to have the other two, which coincidentally, we both have! Are you currently taking any medications? I take 4 currently, three for IC, and Low-Ogestrel birth control pills for Endometriosis. I had a double surgery in December (which apparently is when you made this post!). My gynoc. burned away the mild endom. that I had, and my urologist extended my bladder. The first month, I was totally fine. I didn't have any pain, didn't have to go to the bathroom EVERY HOUR, etc. However, after I had my first period since the surgery, all of the symptoms came back! So discouraging! In March, I started taking birth control pills, which helped some, but was still experiencing pain, esp. more so during my period, and the bathroom issue was of course even worse too. In May, I talked to my gynoc. about simply not having a period anymore at all, until I wanted to start having kids. She fully supported my decision. I asked her if it would affect my ability to have children, and she said that my body would "remember," and that it would be fine. So now I'm period free! It REALLY has helped me, because endometriosis grows in the presence of estrogen, which increases in your body each time you have a period. It won't matter if you have multiple surgeries. They won't help if you keep having a period. Talk to your gynoc. and see what he or she says. Also, I'm currently in the process of waiting for test results for Celiac Disease. In the meantime, I've been drinking TONS of water, and I will also be gluten-free from now on! The medications that I take for IC alone are Elmiron (helps repair the lining of the bladder), Trimethoprim (keeps infection/burning pain away, and believe me, it does! For a week or so a few months ago, I went off of Trimethoprim to see if my pain symptoms had disappeared, and nope they had not! Had INTENSE burning sensation all weekend....felt like my insides were ON FIRE again!), and Vesicare (helps with frequency/urgency, and it definitely has. Don't have to get up to go to the bathroom in the middle of the night now! Can now go to the bathroom every 2-4 hours, instead of EVERY HOUR, unless I drink a lot of water. I'm pretty much pain-free too, except for occasional pain, and of course I still have pain in my upper left side! Hope this helps!
Oh my goodness! You are NOT alone! I COMPLETELY understand what you're going through! I'm so glad I found this site too! I have experienced all this too in the last year-and-a-half!!! Took about 6 months to finally be diagnosed with IC, and then on top of all that, I started getting Endometriosis too!! (I've done a lot of research, and discovered that chances are, if you have IC, you also might have Endometriosis. They call them the "Evil Twins." 90% of females have IC, while only 10% of males have it.) And for the last 5 1/2 years, I've also had unexplained upper left abdominal pain, hence my username, MedicalMystery! The first time I experienced the SEVERE SEVERE SEVERE SEVERE left abdominal pain, right under my ribs and unfortunately, my bra line!, I was on my way out the door to go somewhere. All of a sudden, I felt like I was being stabbed by a sword multiple times, and it didn't come out, ever! I couldn't breathe! I felt like I was dying! I've been stuck with this pain for YEARS! I got really hot all over, felt like I was going to faint or throw up, seeing green from the pain and nausea. I quickly changed into shorts before I could faint, and stayed in bed the rest of the day, crying from the pain and trying to figure out what to do. Years later, as of right now, I'm still unofficially diagnosed, awaiting blood test results, and also experiencing IC and Endometriosis! To make a long story short (too late!), I've had multiple tests done, with no results! You name it, I had it: Bone scan, MRI, Cat Scan, MRI, Upper GI, x-ray, saw a muscuoskeletal doctor, water exercises, accupressure (which did help a little), medications, ultrasound treatments, etc. I'm so glad that I found other people who've experienced what I have, even though it has NOT been fun in the sun by any means. Like a lot of people, the help of 4 medications (3 specifically for IC, and one for Endom.), has helped immensely, including Trimethoprim, Vesicare, Elmiron, and Low-Ogestrel birth control. Trimethoprim helps keep infection/burning sensation away, Vesicare with frequency/urgency, and Elmiron helps repair the lining of the bladder. Of course, all of these medications take several weeks to show results. I'm also going to go gluten-free and do the IC diet, whether test results for Celiac are positive or not. Being best friends with water also helps a lot, clears out toxins, and despite the myth that you shouldn't drink more because you'll have to output more, please DO try to drink a lot of water. It's really helped me a lot!
Like you, I've had bladder issues for the last 1 1/2 years: Burning sensation near bladder, when first began was going every 15 or 20 min. (sometimes going to the bathroom 3 times within an HOUR, now with the help of 3 medications, I can go every 2-4 hours in-between), extreme urgency (when it was time I HAD to go!), fear of being at a place where I couldn't find a bathroom, planning my day around using and locating the bathroom, getting up at least two or three times EVERY NIGHT to use the bathroom, etc. I was FINALLY officially diagnosed with IC in December, when I had surgery to hyperextend the bladder (which was NOT successful, by the way). Do you think you should be tested again? Maybe it could be related to Celiac Disease, not sure. I'm new to all of this, since I'm waiting for test results.
Have you been tested for Interstitial Cystitis? You're probably scratching your head right now, and thinking, "What is that?" I was like that too, when I found out last fall that that's what I had. You have frequent urination. Do you have a burning sensation when you're going to the bathroom, or a constant pain near your bladder? Do you have to get up once or twice in the middle of the night to go to the bathroom? Do you sometimes go TWICE within an hour, whether you drank a lot or not? If you do, you might also Interstitial Cystitis, which is a medical condition for which your bladder has a chronic infection. If you have a UTI test, they will most likely come back negative (Out of three, only ONE came back positive). Ask your doctor to refer you to a urologist if you have one or more of these symptoms. Ask them to give you a test specifically for Interstitial Cystitis. Like everyone else here, I also have the stomach bloating, in fact, it's HORRIBLE right now. Trying to get comfortable!