Hi there, I was just looking for a bit of advice as feeling very overwhelmed by everything right now. I have had problems with pelvic and back pain for years and have been given different diagnosis during that time, including UTI's and endometriosis. I had my first cystoscopy on the 11th of Jan this year where the doctors said they found evidence of intistital cystitis and that was the cause all along. I waited until March to see a urologist, who then wanted to do another cystoscopy and biopsy as this was not done previously. The 2nd cystoscopy was performed on the 4th of May, and the doctor at the time said he found inflammation but that my bladder held 600ml (I was under GA at the time). He is still saying it is IC but waiting for the biopsy results to come in in another week or so. He's also put me on tolterodine and told me that the instillation treatments wouldn't work for me (i cannot remember his reason for this). I am already on nortriptyline and cocodomol to try and manage the pain and urgency wise i go to the bathroom anywhere from 20-50 times a day.
I had my final gynae appointment this morning where she kindly went through the notes of my cystoscopy (as i was confused as groggy when i spoke to the doctor after the procedure). She told me that the urologist doesn't want to see me for another 3 months! I understand he wants the medication to have time to work, but I am terrified of waiting this long. Even with my pain medication, the pain and fatigue is highly debilitating and on bad days I rely on my partner for everything as even getting out of bed is next to impossible. Thankfully the doctors are now giving pain relief medication so I am able to make the most of days where my pain isn't so bad. But I am still not well enough to return back to work and I am a radiography student and need to be fit to work 12 hour shifts that are extremely physically demanding. If i don't go back in the next few months however I could lose my place on the course and I only have 1 year left of studies.
I am terrified this condition is going to take over my life even more than it already has and am struggling not to feel completely hopeless. I have struggled with depression due to my symptoms and only started recently to feel like I was coming out the other side of it, and that I was moving forward to getting help and management of my symptoms. The doctors keep telling me to be patient and that it could take years to find a way to get me comfortable but every day is a struggle and even with the medication I am in constant pain. The pain management clinic told me I should only work part time but at the moment that isn't an option while I am trying to qualify. I know that some people have it much worse and I hate to complain, but I am just very overwhelmed and have lots of questions and I am scared that I am not going to be able to qualify and go back to work.
Has anyone found that tolterodine helps with the symptoms of interstitial cystitis? I was hopeful to try instillation therapy as my first consultant was optimistic this would really help me, but the last consultant did not agree and I am so confused and worried that we will never find something that will help. I'm not sure how much longer I can keep feeling this way, I want to be stronger than this condition and not let it defeat me, but some days it's all just a bit too much. I am sorry for the rant and if you got to the end of this then thank you so much for reading. If anyone has any success stories or ways of coping or has been through this I'd love to hear from you