I had my new urologist appointment yesterday and it was confirmed that I have Interstitial Cystitis (IC)/Painful Bladder Syndrome (PBS) along with my pelvic floor dysfunction. He explained to me that IC was the term used for painful Hunner’s lesions in the bladder, but over the years many people (mainly women but men can get it too) started to get bladder pain/symptoms like someone who had IC but no lesions or ulcers could be seen in the bladder, and therefore the name Painful Bladder Syndrome came about. And apparently I fall under Painful Bladder Syndrome because my bladder looks perfectly healthy with no ulcers or lesions.
I won’t get in to too many details but all I can say was that the cystoscopy was not pleasant. On top of the anxiety about the procedure, I had to wait almost 3 hours after my appointment time before being seen. It was a very long day mentally and physically. Tears were shed and the pain was terrible but I’m glad to know that I do not have bladder cancer and that I am a step closer to finding something that helps me.
The doctor was very kind and understanding and let me go over my medical history without interruption or the need to push me out. I explained my symptoms and what supplements + medication + physio I’ve been taking/doing and he told me that everything I am doing currently is what he would’ve recommended me to do. It was great to know I’m on the right path but also feel worried that this is the best I can get. He explained that there isn’t much treatment for this condition and it all comes down to finding the right tools to help deal with the pain.
I won’t be saying “I won’t let this bring down!” or “IC has nothing on me!” Because that would be a lie. I’ll be honest with you, having an illness has completely changed my life. Even though I knew IC/PBS was what I had, hearing it from a doctor and having them say “there isn’t a treatment and it’s all about managing the pain” really shook me. I’ve learned ways to manage the pain when I’m home and have a bath at hand and can lay down, but what about when I’m out living my life? Today I dropped my boyfriend off at the airport for a trip to Mexico for a friends wedding. I RSVP’d a yes in the winter not knowing I would still be dealing with the pain now, but had to cancel since I knew I wouldn’t be able to go in the state I’m in. I have so many limitations now that It sometimes feels like I’m a prisoner in my own body. I can’t do things I once loved and it was an eye opener leaving the airport knowing my illness is holding me back from getting on with my life.
What I will say, is that I’m not giving up. Yes things could be better but I hear success stories all the time on social media about going into remission for a long period of time, so that is what my goal is. I will try everything in my power to get better and try to live the best life I can with this condition. The doctor prescribed me Elmiron so I’m going to give that a shot and will let you all know how that goes. It doesn’t work on most patients but who knows, it could work for me. I will also continue the following:
- Pelvic floor physiotherapy
- Marshmallow root
- Aloe Vera
- Uva Ursi when needed
I also asked the doctor about the possibility of endometriosis around the bladder causing my symptoms and he told me it is possible since they do happen a lot of the time together but until I have my laparoscopic surgery in November, we won’t know and will just have to find other ways to reduce my bladder pain.
With that being said, I’m so incredibly grateful to have family and friends who have supported me through all of this. I could not do this alone. So thank you from the bottom of my heart to every single person reading this that has been supporting and motivating me through this journey. I love you all.
2 thoughts to “Officially Diagnosed With Painful Bladder Syndrome”
Hi Lindsy! To be completely honest it hurt me but i have heard it wasn’t as bad for others. I felt like I had a UTI right after but I knew I didn’t and it was just my pelvic floor spasming. I have been in a IC flare ever since but I am slowly starting to feel a bit better. Do you have IC symptoms and that is why you are going in for a cysto? I hope it goes well! If you have any other questions, don’t hesitate to ask! 🙂
I was diagnosed with IC in October and had my cystoscopy on Christmas Eve. The pain wa horrendous for the first three days and still bad for a week after. It didn’t help my symptoms but like you, they saw that I didn’t have any abnormalities in my bladder or urethra. I had hydrodistention as well but didn’t find that it helped my symptoms at all. My urologist prescribed me amitriptyline which is really helping my body to relax. I had been so exhausted and even though I would sleep throughout the night I would wake up the next morning just as tired as when I went to bed. I recently bought marshmallow root tablets. Are you finding the marshmallow root is helping your symptoms? Very glad to have found your blog as I’ve felt so alone living with this chronic illness and it’s great to read about someone else’s experience of IC/PBS.