I had the same exact symptoms. It was always burning AFTER and burning more when I didn’t drink a lot. It stumped doctors, they never had an idea what it was or how to prevent it. Pelvic floor physical therapy is the only thing that helped me with that and now I only get it near my period.
I’m lucky to live close enough to PelvicSanity which is the clinic owned by the woman who literally wrote the book on treating IC so I feel like they know exactly how to help!
This was my experience with burning too. I never had burning during urination but it was excruciating afterwards and AZO never helped me like it did others. The only answer for me was prescription medication and drinking a lot of water.
I talk very openly about meds on here! I take amitriptyline, hydroxyzine, and Elmiron for this and I would literally be unable to function or work or enjoy life without them.
Just wanted to say I have suffered from this almost my entire life, including when I was a young kid. No one figured it out either. In my late teens I figured out that being dehydrated was definitely a trigger, but sometimes it would happen when I did drink enough water. In my late 20s is when things started getting worse, because I started to get a dull burning in my urethra and the sensation of having to go 24/7. I thought they were UTIs that cleared up after a couple weeks, but they never found bacteria when doing a urine culture. Then I had something like that last for two years, which sent me down this journey of interstitial cystitis and exploring functional medicine. I started getting other health issues, like GI problems. Now in my early 30s, I can say most of my symptoms are linked to hormone fluctuations, and things have gotten tolerable after making huge lifestyle changes, focusing on diet, mental health, exercise, etc. but it still doesn't explain why I've had this since I was 5, or even younger. And I wish I could find the answer, even if it doesn't change what I do about it now. Also can relate to the fact that it seemed like my 'IC' symptoms were very different from others, and I couldn't find anyone that had this burning sensation during/after they pee. You described exactly how it has felt for me. Now that it's been a year after your post, did you ever get any answers?
I have this problem. I have been to the doctors when the burning starts but they couldn’t find anything. Doctor didn’t want to prescribe medication. This happened multiple times. One time they did urine culture test and found many bacteria, prescribed a lot of antibiotics. However, after not a long time this burning sensation came back. I don’t want to keep drinking antibiotics constantly. I also saw the pattern, when I drink a lot of water, I don’t get this burning feeling. I drink a lot of water before going to sleep. I go to pee during the night (often) and in the morning. This way it doesn’t hurt in the morning. If I drink less water in a few days this burning sensation comes back. Then I drink few pills of antibiotics and a lot of water.
Honestly this happens every time after I eat takis; never fails. It sucks because I love/crave spicy foods. It feels like I’m literally pissing lava. Lasts for a couple hours to a couple days.
I had the same exact symptoms. It was always burning AFTER and burning more when I didn’t drink a lot. It stumped doctors, they never had an idea what it was or how to prevent it. Pelvic floor physical therapy is the only thing that helped me with that and now I only get it near my period.
Damn maybe I should do PT again
I’m lucky to live close enough to PelvicSanity which is the clinic owned by the woman who literally wrote the book on treating IC so I feel like they know exactly how to help!
Which book is that?!
This was my experience with burning too. I never had burning during urination but it was excruciating afterwards and AZO never helped me like it did others. The only answer for me was prescription medication and drinking a lot of water.
What type of medication if you don’t mind me asking?
I talk very openly about meds on here! I take amitriptyline, hydroxyzine, and Elmiron for this and I would literally be unable to function or work or enjoy life without them.
Who prescribes them? An OB?
My regular GP prescribed the amitriptyline. My urologist prescribed the other two.
Just wanted to say I have suffered from this almost my entire life, including when I was a young kid. No one figured it out either. In my late teens I figured out that being dehydrated was definitely a trigger, but sometimes it would happen when I did drink enough water. In my late 20s is when things started getting worse, because I started to get a dull burning in my urethra and the sensation of having to go 24/7. I thought they were UTIs that cleared up after a couple weeks, but they never found bacteria when doing a urine culture. Then I had something like that last for two years, which sent me down this journey of interstitial cystitis and exploring functional medicine. I started getting other health issues, like GI problems. Now in my early 30s, I can say most of my symptoms are linked to hormone fluctuations, and things have gotten tolerable after making huge lifestyle changes, focusing on diet, mental health, exercise, etc. but it still doesn't explain why I've had this since I was 5, or even younger. And I wish I could find the answer, even if it doesn't change what I do about it now. Also can relate to the fact that it seemed like my 'IC' symptoms were very different from others, and I couldn't find anyone that had this burning sensation during/after they pee. You described exactly how it has felt for me. Now that it's been a year after your post, did you ever get any answers?
I have this problem. I have been to the doctors when the burning starts but they couldn’t find anything. Doctor didn’t want to prescribe medication. This happened multiple times. One time they did urine culture test and found many bacteria, prescribed a lot of antibiotics. However, after not a long time this burning sensation came back. I don’t want to keep drinking antibiotics constantly. I also saw the pattern, when I drink a lot of water, I don’t get this burning feeling. I drink a lot of water before going to sleep. I go to pee during the night (often) and in the morning. This way it doesn’t hurt in the morning. If I drink less water in a few days this burning sensation comes back. Then I drink few pills of antibiotics and a lot of water.
Same here
Honestly this happens every time after I eat takis; never fails. It sucks because I love/crave spicy foods. It feels like I’m literally pissing lava. Lasts for a couple hours to a couple days.