Ask Me
1. Who are you, and why did you start this blog?
My name is Lexie Fei, a Canadian-Chinese girl living in Vancouver BC Canada. I never intended for this blog to grow. It was a diary for my journey to find answers. I never thought this little blog would eventually grow so big and reach such a wide audience. Now people are telling me that I am some embedded UTI or Interstitial Cystitis public figure. (laughs) Well, if only it could pay back my huge bladder debts!
2. I want to email you, but your blog says you don't reply anymore?
The email form has been taken off the website as the demand was overwhelming. If you want to find me, please head over here.
3. But I really want to talk to someone, I'm scared and desperate. Who can I talk to?
Please scroll down to Question 22.
4. How long have you been suffering your Interstitial Cystitis or long-term UTI?
Since Feb 2018. I was "almost" a normal healthy girl before this hit. I say "almost", because for whatever reason, I was susceptible to UTIs all my life. I had 8 regular UTIs before this one which were all resolved with one course of 5-7 days of Ciprofloxacin 500mg antibiotics each time. I got a UTI once a year to once every 2-3 years which you can read about at My Story. I had no prior chronic illnesses nor any other significant illness before this. I was active in paddle-boarding and swimming, and had a full and happy life. Then this UTI came and never went away due to an antibiotic blunder which is fully explained my story.
5. How did you know yours was NOT Interstitial Cystitis?
First of all, this started from a UTI. And since it reacted to antibiotics, something told me this monster was still related to that UTI in some way, shape or form. We know our bodies best. But doctors won't believe our "gut feeling", so I had to find a way to provide evidence. I was able to disprove IC with MicroGenDX urine DNA testing, and later, I would go on to do a Pathnostics urine test. I was doing Microgen DX kits once a month to keep track of my progress when I was not on antibiotics but after I went on long-term antibiotics and felt them working, I paused my Microgen DX testing, and that is where I am currently at this stage in Jan 2020. My Infectious Disease doctor told me "IC not a diagnosis, it's just a general term for a bladder problem we don't know about." You can read about all the tests I did, how much they costed, which doctors signed my requisitions, and how I did it.
I liked Pathnostics the most, and Microgen DX second, and I liked doing them both together. I explain on my last post why I like Pathnostics the most.
6. Are you recovered now?
From 2020 - 2021, I felt I could have an almost normal life. I was back to part-time work, could go out with friends, could eat out at normal restaurants and can "almost" enjoy life. But it had a lot of ups and downs. At one point, during one of those years, I wanted to take out my bladder. It was "Oh I'm feeling better" vs "Oh my god, why do I feel awful now?" but it was on an upward trend of healing overall. My social life was back to normal and brimming with activity. However, I dropped a lot of my old friends who were not supportive about this disease, and moved on with new friends. A few old friends that I keep know what I went through, but all the new friends I made have no idea and there's no point for me to tell them anyway. By 2021, I was able to eat way more, but I still ate clean at home, and as clean as I possibly could at restaurants. I could feel my bladder getting substantially better via long-term oral antibiotics which I started in August 2019. I was finally on the right healing path now and could feel real results. But again, it was a slow slow slow lift with ups and downs like a roller coaster. I was confident I could reach a full recovery since that I felt the UTI actually lifting. It took several months of antibiotics before I felt a noticeable improvement, but it was a rocky road, full of ups and downs and I ended up being on antibiotics for years. I had to change them several times as well if one combo didn't feel like it was working. I was with Ruth Kriz until she retired in Fall 2019. I moved onto Dr. Roscoe Nelson, who had consults with Ruth in Aug 2019 to the end of Nov 2019. Then Nov 2019 to present day with Dr. Stewart Bundrick who has sucessfully healed patients I personally knew. He was like Professor Malone-Lee's approach but they approached things differently too. I traded emails back and forth with Malone-Lee (he has passed away and his son is practicing in the UK). In Vancouver BC, Dr. Carley Akehurst was my naturopath and she consulted with Ruth Kriz and she flew to meet with Dr. Stewart Bundrick sometime between 2021 - 2023 (I don't know what year). I coordinated with my doctors and there was some cross communications between all of them, which was super cool. It was like one big group that shared their insights, different approaches, but they all were gunning for the same thing - to resolve that infection in your bladder! Pretty cool! I've made friends with my doctors too, added some on Facebook and I played a video game with one of them too. In a way, sometimes I felt like I kind of brought people together. Maybe I did, maybe I didn't.
Then in 2021, a big POSITIVE shift happened in my bladder when I changed something. It was when I threw Hiprex into the mix of the right antibiotics and the biofilm buster that made my bladder heal in overdrive. It was insane and I wish I knew it sooner, but it was all experimentation and research. Read all about what I took that made a huge impact to get me healing!
7. Of all the treatments you did, which helped you the most?
The long-term antibiotics + Hiprex + biofilm busters - see my last post. They are what are finally truly healing me and my bladder is progressing strongly closer to a normal bladder once I went on antibiotics. This was that started the true healing. I wish I had done this sooner. I did 4 months of antibiotics through Dr. Roscoe Nelson which helped a bit, then further advanced in healing with another set of long-term double combination antibiotics through Dr. Stewart Bundrick. Dr. Stewart Bundrick has been helping a group of chronic cystitis patients for 20 years, although I had only just discovered him in Fall 2019. So I was under his treatment starting December 2019. His protocol is similar to Professor Malone-Lee, but Prof doesn't believe in using DNA urine testing, whereas Dr. Bundrick will do the DNA urine tests. Both also listen to you on your symptoms, even if your urine tests are negative (standard urine tests have a high rate of failure which is explained later on this page). If you were diagnosed with interstitial cystitis, but suspect you have an embedded UTI, I would highly suggest getting a practitioner who is willing to listen to your symptoms, diagnose you and give you long-term antibiotics and you double up on that by adding Hiprex and biofilm busters under the guidance of a chronic UTI naturopath or a chronic UTI site like LiveUTIFree.com. I wish I had found this cure sooner and done these medications right away. But back then in 2018, I was on my own and had to navigate this huge obstacle course ALL on my own. Canadian doctors kept shutting the door on me and it would take me almost 1.5 years before I found the right treatment in the US, which was long-term aggressive antibiotics. Then when I added on Hiprex to the mix later, it would have been 4 years later.
8. What were your treatments and symptoms?
My never-ending UTI started in Feb 2018. Severe bladder pain set me into a wheelchair by June 2018, I was bed-ridden from April to June 2018, then further even more immobile in a wheelchair from June to September 2018. I attempted 2 suicides during this time. It was frightening, I was getting worse at first and no doctor in my city knew what to do. So here were my various treatments:
- an alkaline diet stricter than the IC diet (substantially helped but didn't heal fully via this method, it was helping but not giving me a cure), eventually in 2022, I'd stop the whole alkaline thing and go full speed with an acidic diet to make the Hiprex stronger when I was doing this regime on my last post.
- Traditional Chinese Medicinal herbs helped take away the severe 'bowling ball bladder pain' that entered my life around Spring 2018, but it could not resolve the frequency or burning. But it did save me from my wheelchair life, which I talk about in my posts. It explains what TCM is and how I brewed it and took it. I was walking by mid-September 2018. Severe bladder pain completely stopped by December 2018. There were other mild to moderate pains that I continued to deal with on-and-off. You can read the full details at My Story on how it started, why it manifested, and all the failed and successful trials I went through. As of January 2019, it felt like I was healed from severe bladder pain, but various mild to moderate pains came on-and-off in different areas. My MicroGenDX DNA tests had steadily showed my e-coli pathogens decreasing as I work towards fighting this naturally with clean eating and supplements. During early 2019, I had mild to moderate frequency on good days, and horrid frequency urges with burning niggles in my urethra on bad days. By May 2019, I still had trouble sitting on soft chairs and laying in soft beds, because my urethra would feel this moderate burning sensation like it wanted to wee. I also had a weak bladder, a feeling of mild bladder stinging upon urine filling inside it (if I didn't drink enough liquid), and I definitely still had bladder awareness. At random times, I had lower right ureter tube pain that came and went mysteriously. Then in mid-March 2019, I had left pelvic floor pain and it slowly shifted into left urethra pain by April. It slowly came and went, on-and-off at random times from then all the way until December 2019. I never really knew what that was. Also, back in March 2019, the bladder pain I had felt like an itchy scratchy stinging feeling when it started to fill/is full but it got milder as the months passed by. I was eating a clean diet, but got sloppy around February 2019 - April 2019 and noticed the pains slowly returning. I got very strict clean eating in May 2019 and noticed a big difference. Some days, I felt more recovered at the 70% - 80% scale. Other days, I slid backwards to 55%-60% and felt terrified. It was a constant see-saw. 2018 - 2019 was my darkest year.
- Antibiotic Trials: I did antibiotics which didn't help, but I would learn later it was because it was too short a course and not the right combination.
- Long-term antibiotics + Hiprex + biofilm buster together: This was what started my true healing. When I first started antibiotics, I didn't feel any bigger difference until around month 5. Ever since starting them, it was a slow slow lift. The first two months didn't feel like anything was improving but by around month 3, it was noticeable. Then in month 4, I switched to a combination of 2 different antibiotics taken together long-term, and by month 5 in Jan 2020, my bladder was feeling way better. I did feel sick a bit again and contemplated bladder removal in 2021, but then I felt TREMENDOUSLY better when I added Hiprex + biofilm to the mix as mentioned in this last post in full detail.
9. You attempted suicide twice? How? And are you still suicidal today?
I contacted Dignitas to legally euthanize me back in Spring 2018. They sent me an application to start the process, but they said it could be a long and complicated process and may not even get fully approved. I also joined Exit International because I wanted to secretly locate where to purchase Nembutal to end my life swiftly. The irony is, I couldn't travel to the places to get it because of my bladder, and I didn't know any of the members to ask someone to help me get it. I felt so desperate and attempted a failed suicide in June 2018, and then again a failed suicide in August 2018. Both were done via low suspension hanging (read up about Kate Spade and L'Wren Scott if you are curious what that means). I will not detail my suicides, because since they were failures, I don't want anyone harming themselves and then surviving and ending up with brain damage. Joining Facebook IC groups helped me grow positive again. From my personal experience, therapists and counselors were useless, since they had no idea what a chronic UTI or IC was. They just looked at me like I was an anomaly. A chronic pain therapist would probably be better. I was unable to find one, unfortunately. But an IC colleague of mine went to Pelvic Sanity in US and loved it. I think they have programs there, I don't know. Up until October 2019, I was still suicidal (but the feelings slowly declined as my bladder got better). As of Jan 2020, I was 100% not suicidal, because I was making progress with my recovery. Do I regret the suicides or applying for them? No, I don't. If I had ended my life back then, I wouldn't have minded anyway. I had a very fulfilling and happy life up until this disease came. For me, it was "go big or go home" -- meaning, live a life healthy or not live at all if I'm unhealthy. I may sound stubborn and selfish for saying this, but I refuse to live my life with a chronic illness. But this stubbornness is also what got me healing and propelled me to accidentally become a viral IC and embedded UTI public figure. I never thought this little blog would eventually grow so big and reach such a wide audience.
10. Do you believe in only natural healing?
NO! I believe in both antibiotics, pharmaceutical medication, and natural healing for this disease as a synergy combo. I don't believe in the other medications like Elmiron or overactive bladder stopping meds. I got so many IC patient phone calls on how those didn't work or made them worse. However, long-term aggressive antibiotics was kickstarted my healing truly. I didn't start this route until August 2019, and it has made significant strides in my healing for me by Jan 2020. If I had not gone on antibiotics + Hiprex + biofilm busters together, I would still be struggling today.
11. What diet got you healing?
By the time 2020 came, I had improved in significant strides and got myself out of a wheelchair which baffled doctors and specialists in my city. At times, I did feel stagnant or progressed backwards and it was so frustrating. To be honest, the IC diet you see online is not strong enough to heal you. One of my IC friends who has fully recovered, told me that the "IC diet is garbage". In fact, it contains a lot of bad foods. Milkshake, bread, cheese, and all sorts of foods that are terrible for an inflamed and wounded bladder. What I did was a mix of IC diet + Candida diet + sometimes raw vegan diet + mostly vegetarian diet + alkaline diet (but in 2021, I'd switch to a very acidic diet because I would change my regime to adding in Hiprex which needed acidic bladder environment to trigger its fighting properties).
What significantly helped was a very alkaline-to-neutral diet that was comprised of NO PROCESSED FOODS when I was NOT on the correct medications back then. It was helpful to soothe my bladder, but it wasn't really a full cure. Being on the alkaline diet was a way to kind of buy time for my bladder (to not feel deathly painful) while I searched for the right medications. I did not buy foods that came in a package or box from the grocery store (except plain salads). Everything I bought and ate was food that was directly harvested from the Earth, such as cucumbers, zucchini, wild fish, organic free-range chicken, eggs, rice, organic maple syrup (sparingly) and other vegetables. I avoided foods such as cheesecake, milkshake, noodles, chips, beverages, and bread because they do not grow from the Earth. They contain a lot of man-made chemicals and irritant ingredients that will hurt an IC bladder. In fact, I ate only 5 or 6 of the same foods for the first half of the year that accelerated my healing. This was also what famous IC'er Jessica Parks did (watch her Youtube). I didn't touch a pizza until month 10 or 11 of my healing - that pizza was a gluten-free crust with no tomato sauce and no tomatoes (ingredients on Instagram). By Jan 2020, due to long-term antibiotics, I was able to eat much more and could include some "normal" foods into my diet. But I still continued to eat clean to aid the bladder as much as I could. By 2021, when I did the new regime of adding in Hiprex (explained in my last post), I did a full 360 and switched to completely eating acidic and my bladder started healing faster, NOT because of the acidic food, but because of the medication combos I took, which is detailed on my last post. To not confuse anyone, I'll summarize: alkaline made my bladder feel good but it was not a cure for me -- when I added in Hiprex to my antibiotics and biofilm busting it didn't work because I was on an alkaline diet/bladder -- It only worked when I switched to acidic eating to make the Hiprex work. Just read the last post to understand better what I mean.
12. What are your Cooking Methods?
In the beginning of this disease, I ate mostly eat raw veggies because my symptoms were so severe. Then I started adding in steamed or boiled veggies and fish. I also did the occasional organic free-range chicken or turkey and bone broth, but mostly my meals were veggies. I did the occasional bake but I noticed my bladder started to feel worse on foods that were baked, grilled, etc. Grilling, frying, and stir-frying was and is still a huge no-no. Cooking changes the food chemistry, even the most akaline foods change to acidic when they get heated. The acidity increases even moreso if you bake, grill and fry. I learned this from a TCM (Traditional Chinese Medicine) doctor. I tested that theory. If I ate baked, grilled, or fried foods, I would be weeing constantly. When I eat veggies that were raw, steamed or boiled, my bladder does much better. One time I had baked turkey and I was weeing every 20 minutes. When I steamed that turkey, my frequency went down to about every hour. I talked about it here. In 2020, I was able to eat almost anything. I however, choose to eat clean, and read through all ingredients. I avoid chemicals, preservatives, MSG, coloring, "natural flavors" (a dietician told me natural flavors is deceiving, it can be a food additive or MSG and masked by a friendly word "natural flavors"). I also avoid all citrus fruits, tomatoes, alcohol, coffee, chocolates etc. In 2023, I'm eating anything now, except: tomatoes, citrus, vinegar, alcohol, and spicy foods. For some reason, those make my bladder feel irritated. If I avoid them, I'm fine and I carry on my life without thinking about my bladder.
13. What Fruits or Sweets do you eat?
In the beginning, I had blueberries and watermelon very sparingly. Any fruit I ate hurt me. But then I slowly added on pear, then some strawberries. Sugars feed pathogens, and fruits are natural sugars after all. I didn't venture into eating desserts until my bladder was at least 50% healed first. Now in 2023, I eat all fruits except citrus fruits and I can eat any dessert I like. For some reason, my bladder can't handle citrus fruits, weird. I choose to go sugar-free, not for my bladder but for my teeth (I had a lot of cavities). So I eat sugar-free cookies, sugar-free ice cream, and use Xylitol or Stevia in my beverages and baking. But probably being sugar-free is good for my bladder anyway?
14. What do you drink to soothe the bladder?
To this day, even up to 2023, I still drink neutral PH water of 7.0 (Fiji brand and some other brands) ever since this mess started. I do not drink tap water because tap water in Vancouver BC is acidic, which my friends and I tested with PH strips. I probably don't need to do this anymore now, but it ended up being a habit since I used to be so meticulous with my water when my bladder used to be sick.
12. What are your Cooking Methods?
In the beginning of this disease, I ate mostly eat raw veggies because my symptoms were so severe. Then I started adding in steamed or boiled veggies and fish. I also did the occasional organic free-range chicken or turkey and bone broth, but mostly my meals were veggies. I did the occasional bake but I noticed my bladder started to feel worse on foods that were baked, grilled, etc. Grilling, frying, and stir-frying was and is still a huge no-no. Cooking changes the food chemistry, even the most akaline foods change to acidic when they get heated. The acidity increases even moreso if you bake, grill and fry. I learned this from a TCM (Traditional Chinese Medicine) doctor. I tested that theory. If I ate baked, grilled, or fried foods, I would be weeing constantly. When I eat veggies that were raw, steamed or boiled, my bladder does much better. One time I had baked turkey and I was weeing every 20 minutes. When I steamed that turkey, my frequency went down to about every hour. I talked about it here. In 2020, I was able to eat almost anything. I however, choose to eat clean, and read through all ingredients. I avoid chemicals, preservatives, MSG, coloring, "natural flavors" (a dietician told me natural flavors is deceiving, it can be a food additive or MSG and masked by a friendly word "natural flavors"). I also avoid all citrus fruits, tomatoes, alcohol, coffee, chocolates etc. In 2023, I'm eating anything now, except: tomatoes, citrus, vinegar, alcohol, and spicy foods. For some reason, those make my bladder feel irritated. If I avoid them, I'm fine and I carry on my life without thinking about my bladder.
13. What Fruits or Sweets do you eat?
In the beginning, I had blueberries and watermelon very sparingly. Any fruit I ate hurt me. But then I slowly added on pear, then some strawberries. Sugars feed pathogens, and fruits are natural sugars after all. I didn't venture into eating desserts until my bladder was at least 50% healed first. Now in 2023, I eat all fruits except citrus fruits and I can eat any dessert I like. For some reason, my bladder can't handle citrus fruits, weird. I choose to go sugar-free, not for my bladder but for my teeth (I had a lot of cavities). So I eat sugar-free cookies, sugar-free ice cream, and use Xylitol or Stevia in my beverages and baking. But probably being sugar-free is good for my bladder anyway?
14. What do you drink to soothe the bladder?
To this day, even up to 2023, I still drink neutral PH water of 7.0 (Fiji brand and some other brands) ever since this mess started. I do not drink tap water because tap water in Vancouver BC is acidic, which my friends and I tested with PH strips. I probably don't need to do this anymore now, but it ended up being a habit since I used to be so meticulous with my water when my bladder used to be sick.
Long ago, back in 2018, I used to drink only Fiji brand water, organic marshmallow leaf tea, parsley tea, corn silk tea, chamomile tea and slippery elm tea. I did Flow Alkaline water sometimes, but then I stopped. The reason why I stopped was because it bothered my digestion (google alkaline water and digestion). Also, if you do Hiprex, alkaline water is a big no-no for it. Hiprex requires acidic bladder environment to work. Then in 2020, I started adding milk and watermelon juicing. By 2021, I was able to drink almost anything. In 2023, I am drinking anything and everything I want. But I avoid any beverage with tomato, citruses, chocolate, coffee, and alcohol, because it will irritate my bladder. I don't even like those ingredients anyway so I don't care that I can't drink those.
15. What PH strips did you use to test your food, drinks, and urine?
You can get any type on Amazon or a local vitamin store.
16. What is TCM?
Traditional Chinese Medicine. You can read about what it is and how I did it here. TCM only took away the severe bladder pain for me, but it did not cure my frequency or burning. So after 3 or 4 months, I dropped TCM in favor of long-term oral antibiotics (and later added on Hiprex), which kickstarted the healing more aggressively and I could feel the results much faster than with holistics or naturals.
17. Do you believe Interstitial Cystitis is an infection?
Personally, I am not sure if I believe that all interstitial cystitis situations are infectious, but I do believe the ones that started with a UTI are related to that UTI and are infections. An infectious disease doctor from UBC told me that "Interstitial Cystitis is just a term for MANY possible bladder situations, it is not a diagnosis!" Well said. Anyway, if your standard urine tests tell you that you have no infection, do not totally believe the tests. They have a high rate of failure, as seen on and explained in full detail on LiveUTIFree.com.
18. What bladder pain, pain, nerve or anxiety medications do you take? What are you taking now?
Except for antibiotics, I did not take any other pharmaceutical pain medication. No uribel, no pyridium, no elmiron, no gabapentin, no mybetriq, no toviaz etc. I didn't want to cover up or mask any pain, because I wanted to get to the root of the problem and see if I was actually healing. But don't listen to me on this, you do what's best and most helpful for your body in terms of pain. If you have to go to work, you will need whatever pain meds suggested by your doctor to help get you through the day. I used to be on a lot of supplements, but I've weaned myself off them completely because most were pseudo-garbage and money wasters. A lot were scammy too. What I am "taking now" changed often as I tried to figure out what worked for me. My last post was what helped me. But everyone is different, so do what you feel works for you with an open mind. What worked for me may not work for you. And what works for you may not have worked for me.
19. What is the level of your bladder pain? How frequent are you weeing? Are you recovered?
By 2021, it was at a low level 1-3, and by 2022, it was getting much less and less. In 2023, I'm at level 0. I don't even think about my bladder. I sometimes even forgot I had this disease. Just sometimes though, but I will never forget. I mean, it was the worst thing that ever happened to me in my life. I've had broken bones, ripped muscles, torn joints (from doing stupid stuff in adventures with stupid friends, haha) and NONE of those injuries can ever compare to the crazy pain of a bladder disease.
20. How much have you spent on healing?
From February 2018 to Jan 2020, I have spent a lot (5 figures) on failed and partial successful treatments. By end of 2021, I was nearly bankrupted owing 6 figures because I was not working for so long, paying so much into trying different treatments, there were scams along the way, etc. Mostly the FAILURES costed me big time. I listed them in blog posts, you will have to dig and read because I did a lot of random trials. I met some ladies who healed after churning out $20,000 - $30,000 on many various methods. My total debt caused by the disease climbed up to about $70k by October 2019, due to not working as well. By 2021, my debt was in the 6 figures. In 2021 - 2022, I had to work really hard to get my finances in order and had some help to boost me financially. The help came from the bank, family members, and a partner. If they didn't help me out, I'd just be working even harder to chip away the gigantic bladder bills. As of 2023, I am still chipping away the crazy giant bladder bills while also learning fast to invest and get finances in order as quickly as possible. While people around me probably have it good in life, I have to work harder to get to the same stage since I lost 4-5 years of my life to the bladder disease. I'm ok now financially, but at the cost of working super duper hard to pay off 4 to 5 years of extreme expenses. At one point, I even did 3 jobs to accelerate paying back my bladder bills, and I realized I couldn't keep doing that when I found myself falling asleep at random places.
21. When do you launch YouTube?
My YouTube "Vancouver UTI Girl" was launched in October 2018, but then I took it down in 2021. I am not a fan of recording videos and don't have equipment for it. I kind of abandoned it. I'm too lazy to deal with Youtube.
22. Can we chat / be friends / be email buddies? Who can I talk to for support?
At this point in time, no, I'm sorry, we cannot. I've just been swamped by way too many people. I have moved on with my life.
15. What PH strips did you use to test your food, drinks, and urine?
You can get any type on Amazon or a local vitamin store.
16. What is TCM?
Traditional Chinese Medicine. You can read about what it is and how I did it here. TCM only took away the severe bladder pain for me, but it did not cure my frequency or burning. So after 3 or 4 months, I dropped TCM in favor of long-term oral antibiotics (and later added on Hiprex), which kickstarted the healing more aggressively and I could feel the results much faster than with holistics or naturals.
17. Do you believe Interstitial Cystitis is an infection?
Personally, I am not sure if I believe that all interstitial cystitis situations are infectious, but I do believe the ones that started with a UTI are related to that UTI and are infections. An infectious disease doctor from UBC told me that "Interstitial Cystitis is just a term for MANY possible bladder situations, it is not a diagnosis!" Well said. Anyway, if your standard urine tests tell you that you have no infection, do not totally believe the tests. They have a high rate of failure, as seen on and explained in full detail on LiveUTIFree.com.
18. What bladder pain, pain, nerve or anxiety medications do you take? What are you taking now?
Except for antibiotics, I did not take any other pharmaceutical pain medication. No uribel, no pyridium, no elmiron, no gabapentin, no mybetriq, no toviaz etc. I didn't want to cover up or mask any pain, because I wanted to get to the root of the problem and see if I was actually healing. But don't listen to me on this, you do what's best and most helpful for your body in terms of pain. If you have to go to work, you will need whatever pain meds suggested by your doctor to help get you through the day. I used to be on a lot of supplements, but I've weaned myself off them completely because most were pseudo-garbage and money wasters. A lot were scammy too. What I am "taking now" changed often as I tried to figure out what worked for me. My last post was what helped me. But everyone is different, so do what you feel works for you with an open mind. What worked for me may not work for you. And what works for you may not have worked for me.
19. What is the level of your bladder pain? How frequent are you weeing? Are you recovered?
By 2021, it was at a low level 1-3, and by 2022, it was getting much less and less. In 2023, I'm at level 0. I don't even think about my bladder. I sometimes even forgot I had this disease. Just sometimes though, but I will never forget. I mean, it was the worst thing that ever happened to me in my life. I've had broken bones, ripped muscles, torn joints (from doing stupid stuff in adventures with stupid friends, haha) and NONE of those injuries can ever compare to the crazy pain of a bladder disease.
20. How much have you spent on healing?
From February 2018 to Jan 2020, I have spent a lot (5 figures) on failed and partial successful treatments. By end of 2021, I was nearly bankrupted owing 6 figures because I was not working for so long, paying so much into trying different treatments, there were scams along the way, etc. Mostly the FAILURES costed me big time. I listed them in blog posts, you will have to dig and read because I did a lot of random trials. I met some ladies who healed after churning out $20,000 - $30,000 on many various methods. My total debt caused by the disease climbed up to about $70k by October 2019, due to not working as well. By 2021, my debt was in the 6 figures. In 2021 - 2022, I had to work really hard to get my finances in order and had some help to boost me financially. The help came from the bank, family members, and a partner. If they didn't help me out, I'd just be working even harder to chip away the gigantic bladder bills. As of 2023, I am still chipping away the crazy giant bladder bills while also learning fast to invest and get finances in order as quickly as possible. While people around me probably have it good in life, I have to work harder to get to the same stage since I lost 4-5 years of my life to the bladder disease. I'm ok now financially, but at the cost of working super duper hard to pay off 4 to 5 years of extreme expenses. At one point, I even did 3 jobs to accelerate paying back my bladder bills, and I realized I couldn't keep doing that when I found myself falling asleep at random places.
21. When do you launch YouTube?
My YouTube "Vancouver UTI Girl" was launched in October 2018, but then I took it down in 2021. I am not a fan of recording videos and don't have equipment for it. I kind of abandoned it. I'm too lazy to deal with Youtube.
22. Can we chat / be friends / be email buddies? Who can I talk to for support?
At this point in time, no, I'm sorry, we cannot. I've just been swamped by way too many people. I have moved on with my life.
If you want to reach out to others for support, I recommend these top 4 UTI and IC recovered patients:
- Montreal Healthy Girl (lots of free wonderful IC healing advice on YouTube back in 2019 but I don't know if she does that anymore)
- Jessica Parks on YouTube (in 2019, she ran a great Healing IC Holistically Facebook group here if it's still up)
- LiveUTIFree.com (very detailed website about UTIs and long-term UTIs)
- ICBigSister.com (she was 1 of the first people I turned to for motivation)
You can also reach out to the medical practitioners I talk about at Question 23.
I also highly recommend these Facebook groups since the people there are very helpful. I am in some of these groups, but I am mostly a silent lurker and I stay hidden to avoid people from finding me and messaging me. I don't know if these groups will still be up by the time you find this blog, but hopefully they are:
23. Who are your doctors? How much are their fees? How do I see them? Who is the best?
I was under the care of so many doctors, but the main helpful ones are listed here. Contact them to ask about becoming a patient. So far, the doctor who made headway in my treatment and symptoms was Dr. Stewart Bundrick in Louisiana US. A close second was Professor Malone-Lee (now run by his son, Matthew Malone-Lee). Not second as in "he's second best", but second because I'm located closer to Dr B so it made more sense for me to be treated with Dr. B. I think they are both equally awesome and they have different and similar thoughts. I combined their advice together to heal my bladder. As for who is the best, it is up to you to make that judgement on who you feel would have the best method or chemistry for you. Do your own research and legwork, and come up with important questions to ask the specialists, so you can choose who you want to see. By the time you read this little blog, maybe the information is outdated and there are many more cUTI practitioners then.
24. What are the DNA next generation tests that found infections in your urine that standard urine tests couldn't find?
I liked Pathnostics and Microgen DX to be the best for me as they are what got me healing. Pathnostics was definitely the best for me, and Microgen DX second.
I was not a fan of Aperiomics or Cirrus DX back in 2018-2021.
How I did them, how much they costed, and how I found doctors to do them for me when my country's own doctors refused to are all written on this post. You can find many urologists in the US who do the MicroGen DX urine kits, and certain naturopaths too. I'm not very keen on Aperiomics; I'm more convinced on Pathnostics and Microgen DX. However, you can try Aperiomics because they or somebody claimed that they did pick up a rare virus on a lady's son who had a hanging UTI and when they treated that of him, he did heal. But for the most popular feedback from patients, I've met over 10 ladies now who have healed from Microgen and Pathnostic urine tests under good doctors who understood to use long-term aggressive antibiotics. By the time you read this blog, maybe there are more who have healed, maybe with these kits, or by other kits that are new and have launched after this blog was published.
25. Have you had any trauma, abuse, stress? I read that a lot of patients who get IC or chronic UTIs went through those.
No, I had a happy and easy life before this monster UTI hit! I was an easygoing and fun person with a great lifestyle, lots of friends, great partner, no disabilities, and always going out. I guess that may be why I was more easily swayed to attempt suicide, because my life was so perfect everyday.... that as soon as this mysterious illness arrived, I wanted to end it because I had never experienced anything so frightening and negative! However, this is not to say I am weak, a lot of IC patients have ended their lives (just google it). One of my doctors told me 1/3 of cystitis patients attempted or committed suicide. So back to my history, I always got my UTIs if I held in my pee all day or if I didn't drink enough water. I have a bad habit of hating water and barely drink any liquids all day, I only liked drinking hot chocolate, sodas, juices, and bubble teas so that could be a huge contributor to my constant UTIs, all that sugar can't be good for my gut and bladder. I never drank water for decades by the way - tea and coconut water was the 'closest' I ever got to water. But now that I have this monster, I've learned to adjust to drinking pure water. Anyway, I seemed to get UTIs rather easily, probably due to my poor liquid intake and my habit of holding pee. I know that my grandma and dad had several UTIs in their lifetime, so there must be a genetic component to it for me. I never had surgeries, nor physical or sexual abuse, never had poverty or a hard life, never was bullied, never divorced, not stressed.... so for me, this was definitely not a mental nor emotional trigger. I feel annoyed when doctors or IC patients or specialists kept probing, "Were you stressed?" It was like they were trying to create a fictional cause for this never-ending UTI. My UTI from hell came after I had a weird 1 month stomachache from a spicy East Indian meal, and I barely drank for a few weeks because I was so nauseous after that meal. So it was a physical trigger for me since I was not ingesting much liquid into my body and bladder. For example, I drank maybe 1/2 to 1 cup in a whole day for weeks. This triggered a UTI, and if you read "My Story", you'll see where it turned into this Monster UTI. I just never could figure out why I would be so prone to UTIs though. I thnink about are people who get lost hiking in the woods and have no food or water for 3 days, and when they get rescued, they don't seem to get UTIs. But if it were me, I'd have a UTI by then for sure. It took me a long time to accept I had this chronic illness. I was in denial for so long, I kept thinking, "Why me? I'm so normal and my life was so lovely. What did I do to deserve this?" Chronic illness can happen to anyone.
26. How have you changed after you got this chronic UTI?
My personality had completely changed when the cUTI hit. I was a happy and oblivious person before, living a full and wonderful life before 2018 when the cUTI hit. Then when the disease came, I became an anxious, nervous, OCD person who suffered panic attacks and I am sure I have moderate PTSD from this trauma to this day in 2023. I also no longer trust doctors 100% like I used to, since this disease taught me that many doctors don't know what this is. Doctors in Canada have constantly told me that I had no infection, when I suspected that it was an infection inflaming my bladder and urethra since it started with a UTI and reacted to antibiotics. So I'm now very weary and I research everything carefully to understand pathogens and pathogen antibiotics resistance more. My close friends are shocked at how much I have changed from this. Chronic illness can change you a lot. After two attempts at suicide, which would have been unthinkable back in my healthy and happy time, I have also become much more philosophical. It is a life-altering situation. If you met me in 2017 (before my cUTI) and met me today in 2023 (after my cUTI), you would be shocked at how different I have become. I am totally a different person. Some people say 'bad things make you stronger'. Um... not for me, haha. I think I became a "paranoid, suspicious, OCD-researching, always-questioning the validity of doctors/medical tests" type of person now. New friends probably think I am a bit of a loopy personality, but what they don't know was that I wasn't always like this.
27 Do you make money from this blog?
Well, if you count the few cents that trickle in from a Google ad on here, and the occasional rare donation. I write and provide everything for free because I want to get my story out there and bring awareness to the public that INTERSTITIAL CYSTITIS CAN BE AN INFECTION and there is a POSSIBLE CHANCE THAT THERE IS A CURE. If you like my blog and feel it was helpful to you, feel free to donate a small thank you. The donation button is on the left side column of this blog, I think. I am grateful for any contribution. So when people donate their appreciation, then yes, I get money from those who were healed or on their way to healing because of the info on my blog! I am ever so grateful if you do donate, even if it's just $5!!!
28. When you fully recover, what will you do next?
This was written in 2020: If I heal from this disease, I will most likely step away from this blog and social media accounts. I won't be updating anymore, but I will still leave everything up so that they can continue to help others. I will still keep in contact with only a handful of recovered ICers that I started this journey with. But I won't be talking to anyone who's sick with the disease because I've moved on and don't want to look back. A part of me wants to pursue microbiology for the purpose of bladder research, so that might be something I could move onto in the future. If I enter the bladder industry, I probably would want to do it privately and not be in the limelight, because I don't want to be bothered by anyone. I don't know.
25. Have you had any trauma, abuse, stress? I read that a lot of patients who get IC or chronic UTIs went through those.
No, I had a happy and easy life before this monster UTI hit! I was an easygoing and fun person with a great lifestyle, lots of friends, great partner, no disabilities, and always going out. I guess that may be why I was more easily swayed to attempt suicide, because my life was so perfect everyday.... that as soon as this mysterious illness arrived, I wanted to end it because I had never experienced anything so frightening and negative! However, this is not to say I am weak, a lot of IC patients have ended their lives (just google it). One of my doctors told me 1/3 of cystitis patients attempted or committed suicide. So back to my history, I always got my UTIs if I held in my pee all day or if I didn't drink enough water. I have a bad habit of hating water and barely drink any liquids all day, I only liked drinking hot chocolate, sodas, juices, and bubble teas so that could be a huge contributor to my constant UTIs, all that sugar can't be good for my gut and bladder. I never drank water for decades by the way - tea and coconut water was the 'closest' I ever got to water. But now that I have this monster, I've learned to adjust to drinking pure water. Anyway, I seemed to get UTIs rather easily, probably due to my poor liquid intake and my habit of holding pee. I know that my grandma and dad had several UTIs in their lifetime, so there must be a genetic component to it for me. I never had surgeries, nor physical or sexual abuse, never had poverty or a hard life, never was bullied, never divorced, not stressed.... so for me, this was definitely not a mental nor emotional trigger. I feel annoyed when doctors or IC patients or specialists kept probing, "Were you stressed?" It was like they were trying to create a fictional cause for this never-ending UTI. My UTI from hell came after I had a weird 1 month stomachache from a spicy East Indian meal, and I barely drank for a few weeks because I was so nauseous after that meal. So it was a physical trigger for me since I was not ingesting much liquid into my body and bladder. For example, I drank maybe 1/2 to 1 cup in a whole day for weeks. This triggered a UTI, and if you read "My Story", you'll see where it turned into this Monster UTI. I just never could figure out why I would be so prone to UTIs though. I thnink about are people who get lost hiking in the woods and have no food or water for 3 days, and when they get rescued, they don't seem to get UTIs. But if it were me, I'd have a UTI by then for sure. It took me a long time to accept I had this chronic illness. I was in denial for so long, I kept thinking, "Why me? I'm so normal and my life was so lovely. What did I do to deserve this?" Chronic illness can happen to anyone.
26. How have you changed after you got this chronic UTI?
My personality had completely changed when the cUTI hit. I was a happy and oblivious person before, living a full and wonderful life before 2018 when the cUTI hit. Then when the disease came, I became an anxious, nervous, OCD person who suffered panic attacks and I am sure I have moderate PTSD from this trauma to this day in 2023. I also no longer trust doctors 100% like I used to, since this disease taught me that many doctors don't know what this is. Doctors in Canada have constantly told me that I had no infection, when I suspected that it was an infection inflaming my bladder and urethra since it started with a UTI and reacted to antibiotics. So I'm now very weary and I research everything carefully to understand pathogens and pathogen antibiotics resistance more. My close friends are shocked at how much I have changed from this. Chronic illness can change you a lot. After two attempts at suicide, which would have been unthinkable back in my healthy and happy time, I have also become much more philosophical. It is a life-altering situation. If you met me in 2017 (before my cUTI) and met me today in 2023 (after my cUTI), you would be shocked at how different I have become. I am totally a different person. Some people say 'bad things make you stronger'. Um... not for me, haha. I think I became a "paranoid, suspicious, OCD-researching, always-questioning the validity of doctors/medical tests" type of person now. New friends probably think I am a bit of a loopy personality, but what they don't know was that I wasn't always like this.
27 Do you make money from this blog?
Well, if you count the few cents that trickle in from a Google ad on here, and the occasional rare donation. I write and provide everything for free because I want to get my story out there and bring awareness to the public that INTERSTITIAL CYSTITIS CAN BE AN INFECTION and there is a POSSIBLE CHANCE THAT THERE IS A CURE. If you like my blog and feel it was helpful to you, feel free to donate a small thank you. The donation button is on the left side column of this blog, I think. I am grateful for any contribution. So when people donate their appreciation, then yes, I get money from those who were healed or on their way to healing because of the info on my blog! I am ever so grateful if you do donate, even if it's just $5!!!
28. When you fully recover, what will you do next?
This was written in 2020: If I heal from this disease, I will most likely step away from this blog and social media accounts. I won't be updating anymore, but I will still leave everything up so that they can continue to help others. I will still keep in contact with only a handful of recovered ICers that I started this journey with. But I won't be talking to anyone who's sick with the disease because I've moved on and don't want to look back. A part of me wants to pursue microbiology for the purpose of bladder research, so that might be something I could move onto in the future. If I enter the bladder industry, I probably would want to do it privately and not be in the limelight, because I don't want to be bothered by anyone. I don't know.
Now, here is my new updated reply in 2023: I was once the Vancouver UTI Girl. I just now am a random Vancouver Girl. I don't want this disease to define who I am and I wish to live the remainder of my life peacefully and in privacy.