Update On My Bladder Problems

 If you follow my Instagram, you may know that I have been struggling with bladder pain and frequency for the last couple of months. It is not really ideal to be going through this while away at college and in a pandemic, however, my body clearly has a mind of its own. I have been peeing 15-20 times a day, which is about once an hour or more, and I sporadically get very intense bladder pain that feels like a bunch of lasers are going through my bladder at the same time. Not to mention also getting up to pee 3-5 times a night, so as you can imagine, I'm exhausted. I finally had enough of this and decided to call the urology department at Boston Children's since that's where I get my endometriosis care and I have nothing but good things to say about them. About two weeks ago, I went to Boston Children's to get some tests done. I got a urine flow test where you pee into a "special toilet" (their words) and they see if there are any irregularities. I also had an ultrasound done to see if there was anything out of the ordinary. The ultrasound came back clear, but the urine flow test showed that my muscles were tensing up when I pee which means that my bladder is probably not emptying fully. 

The day after I got these tests done, I had a meeting with a nurse practitioner from the urology department to talk about what was going on. To help the urinary frequency, she said I should start double voiding (pee, wait 10 seconds, then try to pee again to make sure I am emptying my bladder fully), drink more water during the day and hardly any at night so I hopefully won't be getting up all night, and going to the bathroom a half-hour before bed, then right before bed to help with the previous issue. She also put me on a stool softener and fiber gummies just to make sure I wasn't constipated. After my appointment, she called me back saying that she wanted to start me on a medication that is supposed to treat an overactive bladder. So, I did everything she said for the last two weeks, and unfortunately, not much has helped. 

I met with her on a Wednesday and the first weekend after that was pretty much hell. I was having terrible diarrhea (sorry TMI, but this is real life!) and the new medication was making me so nauseous. But I decided to stick it out in the hopes that my body would soon get used to it and it would start helping me. After about a week or so, the nauseous died down and now I only get it a little bit after I eat. That brings me to Wednesday of this week. My bladder pain had actually decreased a lot which I was obviously happy about, until Wednesday when it came back at full force and worse than it's ever been. It's now Friday when I'm writing this and the pain hasn't subsided at all, so I don't know what's going on. I had another meeting today with the nurse practitioner from Boston Children's and I originally didn't hear what I wanted to hear. Despite me telling her that the stool softener wasn't helping and it was actually making everything worse, she still thought I was constipated, however, I spoke up for myself because I know my body and I know I'm not constipated, so she took me off the stool softener and I am going to continue with the fiber gummies and try to eat more fibrous foods. Next, she wasn't very happy that the bladder medication was making me nauseous, so she was wary about increasing the dosage since it hasn't really helped at the dosage I'm at. I convinced her to up the dosage and I would start taking it once I got home for break and it would be easier to deal with nausea if I had any because I'm desperate for relief. Then she wanted me to come in to get a special x-ray to rule out constipation. 

Like you may have seen on my Instagram, I really think that I have a disease called interstitial cystitis (IC) because I have all the symptoms (urinary frequency, peeing a lot at night, and bladder pain), and it is very common in people with endometriosis. I was hoping at this meeting that we would finally talk about me having IC, but we didn't. However, I got a call from her a little bit ago that she changed her mind and she thinks we should start looking down the path of IC. She wants me to keep a diary of how many times I pee and how often and she's going to call me on Monday to discuss it. If it doesn't get any better, then we're going to start talking about IC and she's going to put me on an antibiotic that will hopefully help. I was really happy by this news because I have thought I have had this disease for months now, but I felt like no one was listening to me, even when I present with all the symptoms. It may seem crazy to people outside of this community that I am happy to have someone say I probably have another disease with no cure, but after all the medical trauma that I and many other people with endo and related diseases have gone through, it feels so good when someone validates your pain. 

I am not sharing this with you because I want your pity or that I'm trying to complain, I'm sharing this for education because IC is also another disease that people don't know that much about (hence not having a cure). What I want you to take away from my story today is that you shouldn't be afraid to speak up for yourself. You know your body better than anyone, no matter what anyone else tells you. If you have done the research and you feel strongly about something, then PLEASE bring it up to your doctor because you might not find any answers if you don't. I spoke up and I got the answers I was looking for, thankfully. Also, please feel free to reach out to me on my Instagram @endoisnottheendblog if you want to talk about anything endo or IC related because I know it really helps to talk to someone who understands! 

Food Guilt

     Something that I have been struggling with a lot lately is food guilt. I mean this in the terms of eating things that I know will cause me pain, but doing it anyway because it seems like a good idea at the time. The two foods the cause me the worst pain are dairy and sugar. They are both extremely inflammatory foods and cause me a lot of pain almost instantly after eating them. Over the summer, I tried my best to cut out dairy. I don't like a lot of dairy products so I thought this would be easy for me. I haven't had real milk in years, I don't like yogurt, and I'm not obsessed with cheese. This was going well until I realized that all my favorite foods happen to have dairy in them: clam chowder, fettuccine alfredo, and caesar salad. This became a predicament because I didn't want to give up my favorite foods. So, a friend recommended Lactaid pills to me. If you have never heard of them, you basically take the pill with your first bite of food with dairy in it and it helps break down the dairy enzymes better in your stomach. I decided I would get these and take them on occasion when I would eat dairy. This seemed to have worked for me up until now when I have been having some crazy bad pain and I don't know why. I feel so guilty every time I eat something with dairy, but at the same time, I still want to enjoy my favorite foods and not feel guilty about it. 

    Like I said earlier, sugar causes me the most amount of pain which is very difficult because sugar is everywhere. I feel like I don't eat a lot of sugar because I know it will cause me pain, but sometimes I want and deserve to treat myself to a cookie or a piece of Halloween candy my parents got me. However, I feel SO guilty after I eat something with sugar in it. Like with dairy, I can almost immediately feel pain after I eat anything with sugar and I instantly regret my decision. It is my fault that I'm in pain. Why did I let myself have that cookie? That was so stupid of you. I find myself telling myself these things a lot. Food guilt is very real and it is very present in my life right now. Since I've been having increased pain lately, I have decided to completely cut out dairy and sugar (as in desserts, it's very hard to completely cut out sugar) for the time being to see if that helps at all. 

    I recently read Vagina Problems by Lara Parker and she wrote on this topic. She said she too felt very guilty every time she ate something she knew would make her pain worse, but she has learned to allow herself to indulge and not feel guilty about it. That is something I want for myself, but I don't know if I'll get there anytime soon. This disease is so out of our control that you want to control the things you can, like what you put in your body. Well, I know first hand that that isn't easy and it's not supposed to be. So maybe when you're having a good pain day, then you can eat that Twix bar you've been craving all day, but when you are having a bad pain day, maybe hold off on that chocolate until you start feeling better. It's the baby steps that count toward not feeling food guilt anymore and everything in moderation is okay.