Top 10 Worst Advice I've Received for Managing Interstitial Cystitis
Here is a round-up of the Top 10 worst advice I have ever received by other patients struggling with IC or embedded UTIs (urinary tract infections).
1. Do Yoga
This was the strangest advice I had. But many many IC patients were adamant about Yoga being a way to calm your bladder and mind down. No, no, no and just NO. If your bladder is spasming, doing flip flops, or feeling like a heavy bowling ball (which all mine were back two years ago), there is absolutely no way I could drag that painful bladder to the yoga gym and mat. How on earth would I even get into a car to sit on my flaming wounded urethra (as soon as it touches a seat, it would feel like knives digging into it). Even just moving was painful. Could you imagine lifting your leg and doing all sorts of poses while feeling like you had to pee every 5 - 20 minutes? I tried lifting my leg at home to test that out, and I nearly peed my pants. So if I had been in the Yoga gym, I could have sprayed a poor girl in the face behind me. Terrible advice. (Again, I am no longer like this, this was my situation two years ago). If you want real advice on what could help your bladder and pelvic muscles, get thee to a Pelvic Physiotherapy Doctor. Not Yoga. You should be going to Pelvic Physiotherapy, not hanging out with green tea drinking hipsters. You can certainly do Yoga after you've healed, but not now if your bladder is severe and wounded. Pelvic physio did wonders for me. You may have to try 2 or 3 Pelvic doctors before you find the right one for you.
This was the strangest advice I had. But many many IC patients were adamant about Yoga being a way to calm your bladder and mind down. No, no, no and just NO. If your bladder is spasming, doing flip flops, or feeling like a heavy bowling ball (which all mine were back two years ago), there is absolutely no way I could drag that painful bladder to the yoga gym and mat. How on earth would I even get into a car to sit on my flaming wounded urethra (as soon as it touches a seat, it would feel like knives digging into it). Even just moving was painful. Could you imagine lifting your leg and doing all sorts of poses while feeling like you had to pee every 5 - 20 minutes? I tried lifting my leg at home to test that out, and I nearly peed my pants. So if I had been in the Yoga gym, I could have sprayed a poor girl in the face behind me. Terrible advice. (Again, I am no longer like this, this was my situation two years ago). If you want real advice on what could help your bladder and pelvic muscles, get thee to a Pelvic Physiotherapy Doctor. Not Yoga. You should be going to Pelvic Physiotherapy, not hanging out with green tea drinking hipsters. You can certainly do Yoga after you've healed, but not now if your bladder is severe and wounded. Pelvic physio did wonders for me. You may have to try 2 or 3 Pelvic doctors before you find the right one for you.
2. Meditation
This was another holistic jibble jabble to calm the mind. Oh gosh no. So two years ago, I went to sit with a meditation group, and as everyone around me peacefully closed their eyes and chanted to the soothing voice of the instructor, I felt the clarity of my bladder even more, so the symptoms were MAGNIFIED. I sat there and felt: flaming hot urethra, and the vision of dancing hot peppers were being jammed up into it. "Clear you mind," the instructor purred. I cleared my mind only to feel my bladder twitch hard. The vision of a little gnome doing gymnastics on a trampoline in my bladder appeared. Oh God, no, I thought. "Envision the sky..." the instructor half-sang. I tried to think of clouds. Suddenly, those clouds turned to a hurricane, as my hot cement bladder burned and howled away. Oh look, now those clouds have lightning bolts, as my urethra had this 'zap' feeling like someone had electrocuted it with a wire. Uh oh, the image of a toilet appeared, because I felt like I had to pee really bad now. I couldn't handle it. After 20 minutes of this meditation event, which was supposed to be 2.5 hours, I got up, excused myself to the toilet, wee'd out hot lava pee, and never headed back into the room. I left the building in tears as the vision of gnomes, hurricanes and hot peppers followed me. No, no and no. I don't believe in this kind of mumble jumble. If it works for you, great, but I'd rather get my bladder treated - whether it be antibiotics, herbals, supplements or instills (ozone, antibiotic or whatever), instead of wasting my time in a meditation room talking about fluffy junk that won't heal me. Every moment you do something silly like this, you are wasting your time from pursuing a real treatment.
3. Ice Skating
Yes, an IC patient really suggested this to me on instagram. "Go ice skating with your friends, you will feel better." Good gosh, lady, I can't even walk around without the use of a cane. Go ICE SKATING? Are you nuts? I cannot even imagine. I was turtle walking with a cane at that point, and eventually I ended up in a wheelchair because it felt like I was carrying a bowling ball inside my abdomen. I also had this sensation like my bladder was constantly falling out back then, so if I ice skated, what would it feel like then? Would my bladder really have fallen out and landed on the ice rink? "Oh hey Lexie, hold up! You dropped your bladder over there and it's scaring all the kids on the ice, can you pick it up?"
4. Jogging
"Go jogging to forget your pain." Really? My bladder was twitching and jumping and feeling like it was filling with acid constantly, and you want me to jostle that some more by running? Her interstitial cystitis must be so mild to suggest that. I was showering with a hospital bench and I'm told to go jogging?? REALLY NOW.
"Go jogging to forget your pain." Really? My bladder was twitching and jumping and feeling like it was filling with acid constantly, and you want me to jostle that some more by running? Her interstitial cystitis must be so mild to suggest that. I was showering with a hospital bench and I'm told to go jogging?? REALLY NOW.
5. Sleep on your left side
"It's better for your bladder." What scientific evidence was there for this? I found that sleeping on a hard futon on a hard floor, on my back, with my legs in a V-shape (pillow under my knees) kept pressure off my bladder and had me fall asleep much better. I had to take Benedryl to knock me out to sleep. I could not sleep on my regular bed nor a soft bed, it had to be a thin very hard mattress that made my bladder not feel like it was drooping downward. If my bladder felt "dropped", the wee sensation was 10 times more.
"It's better for your bladder." What scientific evidence was there for this? I found that sleeping on a hard futon on a hard floor, on my back, with my legs in a V-shape (pillow under my knees) kept pressure off my bladder and had me fall asleep much better. I had to take Benedryl to knock me out to sleep. I could not sleep on my regular bed nor a soft bed, it had to be a thin very hard mattress that made my bladder not feel like it was drooping downward. If my bladder felt "dropped", the wee sensation was 10 times more.
6. Take Supplements 1, 2, 3, 4, 5, 20, 30, 100! I'm not Healed at all, but I think they work!
Everyone was taking so many supplements, some were taking up to 20 supplements per day. This was bad, I was taking over 15 supplements and not knowing what was hurting or helping my bladder. When I tested them one by one, I found out there were 2 supplements that were adding severe burning to my urethra: BladderEase and Buffered Vitamin C. After I stopped everything, and only took a few (and very slowly and carefully) was when my bladder truly started to heal. Today, I am only on Florastor Probiotics, West Coast Mint D-Mannose, Vitamin D3 drops. That's it. And of course, my trusty long-term antibiotics which you can read on my old posts. I may add in other things from time-to-time, they change depending on how I feel. But the top core 3 things are what I just listed. You need to take it slow and try things one by one and over the course of 1 - 2 weeks to really know if it's helping or hurting. Don't waste thousands of dollars like I did on supplement scams that didn't work.
7. "Take My Bladder Course, Invest in my Holistic Therapy or Buy My Book!"
I have to be 50/50 on this one. I took a bladder course and the instructor was a bit whacky. She banned me off her Facebook group because I wrote that I didn't want to receive her mailing list (I wrote it nicely) so I asked for a refund from her life-long bladder course. A lot of my Facebook users saw her whacky comments on my FB and told me she was a nut. You meet a lot of personalities out there. I've learned that there are a lot of IC patients who suffer from other disorders as well, so you have to take caution in who you are getting to know. Then there were healed IC and UTI patients who wanted to sell their knowledge or holistic therapy for thousands and thousands of dollars. There was a girl who healed her IC after 19 years and was selling her knowledge for $6000. Um, I met UTI patients who healed under Professor Malone-Lee and Dr. Stewart Bundrick in under 1 year, and their knowledge is shared for free. Why the hell would I pay a girl $6000 to heal in 19 years? Don't fall for scammers! Not everyone is a scammer, some are legitimate and will help but just still need to have a business or income and I get that. But there are a lot of sheep in wolve's clothing out there who want to take advantage of desperate and vulnerable people. I was once, one of those desperate people. And of course, there were some who wanted to sell me their books or worksheets or supplement/vitamin programs. It seemed all too salesmansy. It is far more helpful to see one of the doctors I listed on my page, then to do any of the above. It will save you a lot more money too.
8. "See My Naturopath! She's Good!"
Ok, this one is 50/50. There are good naturopaths and bad naturopaths. I had bad naturopaths scam me thousands before I found the right naturopaths. The good naturopaths for me were Ruth Kriz (now retired in the US) and Dr. Carley Akehurst (Canadian naturopath). But before I met them, I was scammed around $2000 by other naturopaths who claimed they could heal my interstitial cystitis. It wasn't ic in the end anyway, so yeah no wonder the others couldn't help me. They got me to pay for SIBO tests, gut tests, tests you never heard of under the sun to take my money. Be careful of holistic doctors and naturopaths who say they can help you with your ic or UTI if you haven't heard of any patients who have successfully come out from them.
9. Learning from Non-Healed IC Patients
When I first started my journey, I was talking to a lot of IC and UTI patients who had been suffering for years and years and years. Guess what, of course I wasn't healing. I was learning things from patients who were never healing! As I started to meet patients who were healing and successfully healed, that's when I gained real knowledge. Now I only talk to patients who are knowledgeable and healing and/or healed. The ones who are desperately in trouble over and over, there's a reason they are are not healing. You are not going to learn anything from them. You will end up like them. Once you get your knowledge from the right people, you are on your way to healing. Spread your knowledge and advice then to those who are suffering AFTER you have found what works for you. Don't spread misinformation and guesses to each other. Nobody is going to be able to help each other that way. I had to drop my conversations with a lot of non-healed patients, because they were going around in circles with their bladder, never healing and never getting better, while I was healing. Many of them were too stubborn to admit that their interstitial cystitis could be a pathogenic or bacterial or viral infection, and would not look beyond that. There are still around 60+ girls, who started this journey with me back in 2018, are still suffering in severe pain, catheterizing themselves endlessly, suicidal and peeing 30-60x a day, while I am now leading an almost normal life. Yet, they tell me they have "real ic", don't want to talk to any of the doctors on my page, and have resigned themselves to that life. I don't understand why people would not want to heal, but I had to break away from those people because it was dragging me down.
10. Diagnose Yourself
So many ic patients told me to diagnose myself. I again, am 50/50 on this. That's a dangerous thing to do, to put yourself into a category without looking for answers first and trying new things. I advocate to search for answers, but do not 100% label yourself with having something until you have found evidence. For example, a girl told me "Your symptoms sound like you have Hunner's ulcers, so you need instills or to cut/burn them off." Before I went for that, I had a bladder ultrasound and signed up for a CAT Scan. I did Microgen, Aperiomics and Pathnostics urine tests which revealed pathogens. Guess what, the pain went away when I went on antibiotics with Dr. Roscoe Nelson and then further pain disappeared with Dr. Stewart Bundrick. They were right, it was a UTI severe infection all along. So you need to search for answers at all costs, keep looking. But don't resign to one thing without evidence. If I decided back then that I had Hunner's ulcers, I could have rejected antibiotics and just said, "I have ulcers, I need to go get them burned off or instilled" and then I could have ended up with the wrong treatment! I could have had a very broken bladder today, still walking with a cane, instead of skipping and laughing with my friends today!
So many ic patients told me to diagnose myself. I again, am 50/50 on this. That's a dangerous thing to do, to put yourself into a category without looking for answers first and trying new things. I advocate to search for answers, but do not 100% label yourself with having something until you have found evidence. For example, a girl told me "Your symptoms sound like you have Hunner's ulcers, so you need instills or to cut/burn them off." Before I went for that, I had a bladder ultrasound and signed up for a CAT Scan. I did Microgen, Aperiomics and Pathnostics urine tests which revealed pathogens. Guess what, the pain went away when I went on antibiotics with Dr. Roscoe Nelson and then further pain disappeared with Dr. Stewart Bundrick. They were right, it was a UTI severe infection all along. So you need to search for answers at all costs, keep looking. But don't resign to one thing without evidence. If I decided back then that I had Hunner's ulcers, I could have rejected antibiotics and just said, "I have ulcers, I need to go get them burned off or instilled" and then I could have ended up with the wrong treatment! I could have had a very broken bladder today, still walking with a cane, instead of skipping and laughing with my friends today!