Everyone diagnosed with IC should watch this. Was diagnosed in 2005 and managed things well until this year. You can feel better don't lose hope. I panic when the pain comes back which really makes matters worse.
@anahi andres Lots of Preleif, allergy medicine sometimes (children's benadryl), muscle relaxer, and don't get constipated. Did Elmiron initially, seem to help. But really relaxation worked most ,even trigger point injections .
God bless you both! I went on facebook just to find support and I found hopelessness, total restriction to diet, suicidal and very depressed people. I had to get out of there fast. I am having a rough enough time as it is with this! This video gives me so much hope! I don't feel like anything and everything is going to be a problem and my life is over like I did on the facebook groups about IC! Thank you!!
The things you mention make so much sense! I’ve been in the IC battle for 4 years. I seriously hate living like this. I am malnourished as you said. The urologist told me to cutoff most foods and sent me on my way! The minute I wake up it’s, “ hope I can pee without pain” Yoga for pelvic floor relaxation and lymphatic drainage has helped me and an organic diet, but Im looking for other exercises for the pelvic pain. This week the pain in my pelvis is intense. I’m excited to watch and hear some positive information for once! PT did help but the pelvic specialist where I live was not very interested in continuing treatment that helped me. It’s a weird disorder that health professionals seem to be very callous about. I am not giving up hope after listening to your info! God Bless you both!
I am glad you are finding some relief in your symptoms. My Overcome program provides guidance for soothing both the mind and body and great lifestyle tips. You can get the first week for free bit.ly/overcomewomenfree
Had it for 4 months, horrible! I used a castor oil pack. I looked it up and sure enough, it works great, not overnight, but it does work. I put a high quality castor oil on a large bandage and stuck it right on the bladder area and my lumbar spine. i wore it overnight for about 3-4 nights. A castor oil pack is also available online and can help SO many other things. Cysto Renew is a great product too!
I am blown away that you've made the link to histamine!! Bravo. I have been asking doctors for more than a year now about the histamine/bladder link (also its link to sinus and asthma issues). So far, nobody knows or is interested. You're ahead of your time.
Same. I suffer from pretty unpleasant allergies and I have IC. My old urologist would prescribe me montelukast. Looking back on my childhood I did have worse pain at times of year when my seasonal allergies were worse.
Thank you so much for this video, I'm 33 and have suffered from IC and pelvic pain since I was 19 and it is only now with the help of an osteopath and the Dr. Bri pelvic exercise Videos that I realized that there is so much to learn on this condition and heal in completely natural ways. I have just been told by many many (male) doctors to just take antibiotics which did not do me any good!
Literally was just told today that I have this and I should find support groups. These support groups are almost entirely suicidal, negative, and hopeless. Great. I feel better already.
I am crying for joy watching this video and will buy your book! You gave my hope after another flare up yesterday. Thanking God for Azo too got me through the day selling with my husband his rustic art at our farmers market! Hopeful from Oregon❤my daughter’s name is Brianna too and she works in mental health..God bless you both with this video of hope!!
I have suffered with IC for over 20 years. I am 70 years old now and I have recently been prescribed a hormone pessary by my GP. Oh my goodness, the IC has completely gone! After all those years of suffering,I can hardly believe it. It’s like a miracle. But why did I have to wait 20 years for a cure when the answer was so simple.
It's wonderful you've found relief, and your experience highlights the importance of considering hormonal factors in pelvic health challenges. ~ Vibrant Support
The biggest myth is that IC is about the pelvis-it is a whole body issue-with fibromyalgia, migraines, nocturia, vuvodynia, and chronic fatigue-that is noticed in 80 percent of patients-if only the pelvis is considered, you are not seeing the whole picture. In Canada, it is listed as a symptom of Lyme disease.
Wow that makes total sense. I have been diagnosed with IC, endometriosis, fibromyalgia, chronic fatigue,nocturia and chronic migraines. And have came back positive for 3 Lyme panels but I guess you have to be positive for 5 out of 10 ( in US anyway) to be diagnosed with actual Lyme disease .That's crazy. Thank you for the information 😊
Hey! I just read your comment here. I am in exact same situation reading it was like reading about myself. I am dealing with it for about 8 months now. I was curious if anything brought you a relief and in general did you manage to figure out your triggers?
@@Ida-Adriana I’m so much suffering bladder pain but Doctor don’t give any medicine ic is cured by antibiotics if so which one is to better to take antibiotics plz help me ??
@@kusmarai7540 don’t take antibiotics for IC! Only if you have a UTI. antibiotics will not target most chronic health problems. IC is a chronic health disorder.
@@kusmarai7540 It cannot be cured by antibiotics. You have to reduce stress level and find out which food items flare up your symptoms and restrict it . And do meditation’s and exercises . This drug only relief the symptoms Elmiron 100mg bd for 3month duration . This will definitely help .
Hello all, I was diagnosed with interstitial cystitis for many years. Nothing helped, not the traditional treatment, not the antibiotics. I´ve been on vaginal HRT (hormone replacement therapy, estrogen) for 6 months now and the pain stopped within the first few days. Please note that postmenopause can be the reason for those symptoms.
Thank you for sharing your experience - it's a great reminder that hormonal changes can significantly impact pelvic health, especially post-menopause. ~ Vibrant Support
My chiropractor also said that if you have sacroiliac joint issues it can also cause some of the bladder pressure and urinary pain - they share a nerve that affects this
That's a great point - the connection between sacroiliac joint issues and bladder symptoms highlights how interconnected our pelvic region really is. ~ Vibrant Support
So are you saying the doctors diagnose this mainly by symptoms? My endo surgeon said he does a diagnosis by taking a sample from the bladder. Diagnosis on symptoms alone seems like the likelihood of these misconceptions will be higher. I was diagnosed with IBS for 10 years based on symptoms alone. And after it lead to issues leading to surgery, they found endometriosis on my bowels and chronic appendicitis. I am now forever leery on diagnosis based only on symptoms...
This is such a good and helpful video. I basically have had this for YEARS, probably about 20 years!😢 During that time, doctors didn’t do much, but I figured out the histamine link, and also clearly have some kind of inflammation issue with my skin. I also have issues with histamine releasing foods and pain. I’ve gone back to the doctors recently to see if I can get a proper diagnosis, but I just don’t think they will label it as IC, but will see. Have literally just bought Nicole’s book!
I'm glad to hear you found the video helpful! It's often a challenging journey to identify and manage conditions like Interstitial Cystitis (IC), especially when they have a range of potential triggers and symptoms. Working with healthcare professionals who understand these conditions and taking a proactive approach to manage your health, including dietary considerations and lifestyle changes, can be key to finding relief and improving your quality of life. Nicole's book can provide valuable insights and guidance on managing IC, so I hope it proves to be a valuable resource for you. Best of luck on your journey to better health and well-being!
Im chronically depressed about this condition. I feel like its damaging my only positive relationship.i feel like it has ruined my life and I'm hopeless :,(
I couldn’t agree with you more. This condition has messed me up physically and emotionally. I feel hopeless and hope we all find a cure or something to help us. So lost in this battle
I've IC for three years, I've controlled my IC though eating a whole food plant based diet made up of purely organic food and intermittent fasting, you need to overhaul your whole life style. Get rid of everything that isn't whole plant based food, for example refined sugary foods like cakes and cookies and things like refined bread and pasta. Also remove anything toxic such as alcohol, smoking and caffeine. Replace all of the toxic things with a wonderfully healthy diet which will make you feel good in the long run. This diet should include gluten free whole grains such as rice, quinoa and amaranth, healthy organic veg of all colours but especially dark leafy green vegetables, legumes like lentils and beans plus healthy fats from nuts and seeds. If you are struggling with giving up toxic substances as I was, it may be worth seeing a counsellor to help you through. Intermittent fasting is essential to give your body a chance to heal Check out the Happy Pear of inspirational recipes, not everything on there is suitable but there are loads of great recipes which will help. It takes a while to get your larder in order, but it's worth it in the end. th-cam.com/users/thehappypearvideos
How horrendous life can be with lC. Have had every test possible over 16 years . Haven’t had a diagnosis yet ! But this is so it . Verterbrae damage c5 6 7 and 8 . Affect the nerves.looking into this being base of my problem 😊
I'm caucasian, male, going on 80 years old, and I have had either Chronic Prostatitis or Interstitial Cystitis for about three decades. I'm being treated for Chronic Prostatitis symptoms that may really be Interstitial Cystitis symptoms. The truth is that many doctors don't seem to know the difference between the two conditions. I tend to disagree with the claim that none of the pain can be in my head when on some occasions it definitely appears to be. When I'm in a car, driver or passenger, I sometimes realize that my bladder is beginning to feel like I might need to pee. Within minutes I get a terrific pain that usually cannot be remedied except to wet my pants or stop the car and jump out. Or my brain will divert the painful urge for minutes or an hour until I can find a restroom or until the painful urge comes back again. Likewise, when I get to the restroom I may stand by a urinal or sit on a stool for several minutes and little or nothing will come out, even though the pain is still very much apparent or not. I have learned that I must breathe slowly and deeply and relax my body, and slowly the urine will begin to flow, often at a healthy rate. Even when I have a good flow, my bladder may only be about half empty when the flow stops, and generally the flow won't start again, even if I try relaxing more. If I press firmly on my abdomen about 2-3 inches below my bellybutton, I will usually get the painful urge to go again and empty more of my bladder. When traveling, this extra effort takes time but may mean that I have a better chance of finding another bathroom before the next painful urge enters my brain.
I am sorry to hear that. I hope you find a supportive pelvic floor PT. In the meantime, you can check these resources bit.ly/femtension ~ Leila from Vibrant Support
I have IC but an abdominal exploratory surgery in the 1960s left extensive scar tissue in my lower stomach and pelvic area which has since hardened and become inflexible and caused problems and pain with my connective tissue as well. Pelvic floor exercises have helped tremendously, too. I also have migraines and food allergies which I believe contribute to IC and pelvic floor pain.
I’ve had this condition since 2012. Scene every Dr imaginable and nobody besides an ER Dr suggested I have it. Had a very painful cystoscopy with no lesions therefore was told it’s not IC. 😡 I have all the symptoms of IC. Why can’t I get a diagnosis???? It’s horrific! And has ruined my life!
Hi Tamara .research nerve damage . Vertebrae damage causes pressure on the nervous system leading to bladder problems. Check out Vagus nerve compression. Good luck.
@@Србомбоница86 no pain but its uncomfortable . I’ve started using one of the pump up neck cervical stretches and have gotten a little relief. My night time toilet trips have reduced. I find if l eat chocolate or have any sugar my nights are hell .. every IC system but no urologist can help .. l have had 4 😌.. MRI was done and l have a pinched nerve and marrow pressing onto Vegas nerve . Check out Dr Mandel on here he’s brilliant. Good luck. It’s horrible to live with research as much as you can 🙃
I think I may have this I was constantly going to the doctors before I was diagnosed with endo but I also had urine tests all the time because because of burning when I pee and it's happening again, the tests keep coming back clear I get so frustrated I say to my gp I am not friggen making this pain up.
Get your doctor to give you a referral to a urologist after seeing 21 doctors in different clinics and trips to the er this is what they are looking at for me tho they said I need to do a test for endometriosis also but good luck dont give up
Professor James Malone-Lee is curing it with long term antibiotics, urine test & cultures miss many infections, there is research showing this online. Are you in the UK? He's based in London.
@@carriejones6109 That's what I am afraid of. My gyno is telling me to have the endometriosis procedure done. But the thing is I never had IC/ BPS until about 4 weeks ago. It all started after having a Cystoscopy. I would hate to go through another procedure for nothing. Especially since one I just went through messed me all up.
Coming from the male perspective I can confirm much of what Nicole had to say. IC in men is not only a bladder thing....but affects the prostate and the guts as well. I have had it since 1982. Some people have gotten better but for most some version of what you have now, you'll live with forever. It's not curable but it is treatable. IC has two components. The autoimmune and the pathogenic. (The latter may come as a surprise as you won't find it in the books.) Which comes first, the autoimmune or the pathogen? I don't know but I suspect the immune problem comes first. The pathogen is called gaffkya. It's a common bacteria but for some reason it proliferates and attacks some people, hence IC. It lives inside the meat of the bladder. It is insidious. When you give a pee sample and it comes back blank there is a reason. Gaffkya is not checked for. In short it is hard to culture. If you're curious I'll explain further. I wrote a book that covers all this but I'm not here looking for customers. You ask, I'll tell you where to look. This pioneering work was done by Dr. Paul Fugazzotto a couple of decades ago but it never took off, partly being his own fault. I believe in his work, the same as I believe so much work by the learned college gurus into IC was mostly to keep the til jingling. In conclusion, you're not likely to get rid of your IC. There is as much of a lack of good info and misinfo today as there was in 2000. Your best bet is to determine to LIVE with it. Survive it. Don't let it beat you. YOU know what's best for you. Trust in yourself. Determine the foods that are making you hurt worse and eliminate them. Learn from others who have had success. Share your successes. Discussion is a MUST....and a thing sorely lacking these days. Twitter-like messages just won't cut it. Find a support group that actually shares and participate. Don't be stubborn and don't do drastic. Start in the little things (like food and substance identification). Keep track of what you eat and when. Study yourself! There is no miracle cure out there and I don't think one likely. Sit back and wait for others to solve YOUR problem at your peril. Believe in yourself. Live with IC. Beat it, or it will beat you. Live.
@@hamudydudy9785 Don't know a thing about Botox HD. I was around when Elmiron came out. Never tried it. (With no evidence) I always thought it was a gimmick. We've always had the most bizarre quack cures from the mercury bladder wash to DMSO. If it hurt they tried it even to removing the bladder. MY constant was always less is better than more and if it hurts...quit. I explain all this in my book which is a compendium of our very early support group. THE PIONEERS OF INTERSTITIAL CYSTITIS. It's as cheap as I could make it (as low as Amazon would let me go for print, anyway.). Much in there is still good and valuable info. GREAT hearing from you. Don't be afraid to experiment and remember...if it hurts...quit.
FASHIONfordable for me it’s not IC. Been through hell since I posted this 8 months ago. But it woke me up. It’s definitely a pelvic floor problem. Been stretching and working my body daily. Helps a lot. Way less symptomatic.
@@SUPER_JAVI no. I figured it all out. It’s muscle tension. Pelvic floor and hip problems from sitting too long for years working. Saw a physical therapist and work out. It’s 95% better. Got my life back. It just takes a lot of time and effort.
I’m 31 and just got diagnosed with this after my doctors thought I had an antibiotic resistant UTI. After my UTI didn’t get better after multiple rounds of antibiotics, they found there was actually no bacteria in my urine. At which point they told me to go to the ER. I did not need to be in the ER.
I've had chronic UTI's since I was a child. Years later I've since been diagnosed with Hasimotios, autoimmune arthritis, liver disease, Sjogrens, Crohns and Renaud's. The last few years I've been getting what feels like a UTI but my urine shows no infection. My new female Dr. just told me the other day she believes I could have IC. I've never even heard of it before. The last urine culture has 10-15 epithelial cells (which I know how to do a clean catch so I don't know), a trace of ketones, 30mg of protein, higher PH and crystals. Other than than...normal. I'm just so tired of everything!! :(
We are so sorry to hear about your symptoms. You might benefit from gentle tension release movements to alleviate some of the discomfort you are experiencing. ~ Vibrant Support
The ic diet was everything for me and not even close to restrictive compared to the diet I have to follow! I now follow low histamine . Histamine is def the driver of ic for many .
I was diagnosed wIC37 years ago can't standtgeflare ups burning up all going to bathroom all nights!got this I wenttoa femaleurologist who gave me cipro which had reaction and it burned my bladder I hadi instillationsof medicines 4xit helped we away But I canter anything gnome fasr foods only what I Make myself it's the most depressing thing!
I hear how exhausting these IC flares are, especially with nighttime bathroom trips and strict diet limits. It's so challenging, but don't lose hope - many people find better ways to manage IC symptoms over time. 💜
I just started the DMSO today. It was so painful all day long. Talk about burning holy cow I was in tears. I’m so frustrated as none of this information has ever been mentioned to me. I’m learning more from this video as well as Dr Bergs video I came across last week. I have 7 more treatments to go of the DMSO. I’m dreading it if I have that same amt of pain going forward. I’m planning on PT next for pelvic exercises. Have no idea what that means 😩🤷♀️
I have recently had symptoms and took at home uti test because I don’t have insurance. And it looked negative. I’ve taken them before at home when. I used to get frequent utis and those went toward the brown pinkish positive colors. So I was like ok this time I don’t have uti supposedly but some symptoms so what is it? When I had a Dr-she is a nurse practitioner, the last times I felt uti symptoms I did the tests and culture abs was negative so I was like ok maybe it was my over active bladder or my back because my back sometimes bothers me due to a hernia and other spinal things I can’t pronounce. And the pain would radiate in my abdomen and pelvic but looking back it could have been ic flare up. It’s interesting my doc didn’t refer me to a urologist or look into if I had IC after I tested negative for uti. So dumb. And I should’ve gone to one now I dint have insurance. So I went through wisp and got a Dr via telegraph for low cost and am in bactrim for seven days so I have that for now and taking Prelief again b/c I got that awhile back because I had a acid reflux flare and had to do that diet and found Prelief and noticed it was also for this IC. And I am changing my diet. I havnt had cold brew coffee in a few days although I’ve heard it was a lot less acidic than regular coffee. A lot of acidic foods I’ve cut out or cut down in anyway because I’ve dealt with acid reply’s/GERD/heartburn.
I have had IC since I was 18 and am now 70. Nothing has changed in treatment plans in all those years. Elmiron is nothing new, I took it 30 years ago. I have drifted in and out of flares my whole life with nothing really being a long lasting help. I am currently into a flare that has lasted 1.5 years with the occasional day of relief. I have discovered over the years as my Rheumatoid arthritis flares so will my bladder. IC is part of the autoimmune family of diseases. I love the optimism of the two ladies, and nice to see younger health professionals trying to help, but they have not presented anything new that IC patients have tried over the past 50 years that I have tried to managed the pain to varying degree of success.
ALTERNATIVE HERBAL TREATMENT CURED ME FROM CYSTITIS UTI AND FIBROMYALGIA, I TOOK THE MEDICATION FOR 21 DAYS🙏🏻🙏🏻 I WILL FOREVER BE GRATEFUL TO DOCTOR ISIBOR
I agree that just like eczema each person has different foods they can’t eat. I eat tomato products and I haven’t noticed an issue. So I definitely believe people need to pay attention to what they eat by journaling. I have a rife machine and it has frequencies for this condition, so Ive been running these to see if I can clear it.
I think I've had IC for about 20-25 years but I was only recently diagnosed. Prior to the diagnosis I was positive there was a problem, but all tests came up negative. All I could describe it as was .... like my bladder wasn't a taut elastic pee holder that shoots a mile, but rather it felt like a wet sponge. Sponges don't snap back empty, they just hang there half full of HOT piss and it's that hot gotta pee feeling that will drive you to the doctor (who can't do much for you) It's a difficult condition to have. Sleep is all but impossible - Christ I get up 30-40 times per night. I gave up on the doctor for this condition but I see that @Laura Maria Scapin is having luck with an Osteopath and that'll be one of my last tries before I put the wing suit on.
I have this feeling of warmth/burning in my pubic region and urethra before and after pee and it sometimes lingers for hours. I haven't been diagnosed yet. How are you managing?
I am just coming across your video, this morning. I have tried everything known to man for IC. I am not in the average box of people who have IC. I was diagnosed after my bladder was ruptured during a C-section, so according to the doctors IC is the result of that. I am annoyed because, no study will take me and no meds seem to work. And as I've gotten older at times I feel like I have no feeling in my bladder and I'm losing control along with no sleep, since I constantly have pressure and pain no matter what I do... Any advice you can give me would be great! Thanks for the myth busting on this condition. It's very helpful.
IC is the biggest myth. No evidence to supports its existence or it's etiology. Invented by lazy doctors and perpetuated by greedy PTs. Unless you have a structural abnormality, 99% chance you have a chronic UTI which is being missed by insensitive meaningless tests like dipstick and urine culture. Follow and watch Live UTI Free or read Cystitis Unmasked by James Malone-Lee. 🙏
Please do a video with Dr. Angel Johnson of Greater Boston Urology if she's willing. She's a urogyn and specializes in pelvic floor pain and prolapse. She's my doctor and has helped put together a team to treat my chronic UTI and pelvic floor issues. I was born with bladder extrophy and she explains things in plain English and makes her patients extremely comfortable.
Hello my name is Marina. I have been suffering from interstitial cystitis for 2 years..I was diagnosed 2 months ago. My urologist said I have a lot of red dots in my bladder. I also have pain in my left hip/bottom. I have a constant urge to urinate, even when my bladder is empty. I can sleep well at night. Can my pelvis be to blame for my problem. I'm from Germany and I'm looking for help everywhere.
I have this problem for 10 years, everytime I go Dr. I always get tested for infection, it comes back negative, The Doctors don't have ideas, then think it mentally, that' nothing wrong, My uti, comes go , there's day it painful, it burns 🔥, so bad, I night I can't sleep, I have to get up like 20 times to go restroom, my bladder don't empty anymore, I go just a little drop comes out, but it burns, my back hurts, I'm so frustrated, the only way I can rest a little to be able to sleep is by putting pressure in my bladder, so I sleep on top of my stomach, by 5am, I'm in so much pain, I have to run 🏃♀️ to restroom, I can't go back to bed because I'm in the restroom pee, 3 time oh 4 times at same time, so I'm in side the restroom for 35 minutes, pee.. It so difficult, I don't know where to get help, my Dr just says he has never heard about it, so I when to others Dr, she thinks it stress, she tells me I need to relax and breathe, and try to lost weight.. A other Dr told me it mentally maybe I'm suffering depression oh of something, My family don't understand, then think I'm trying get attention, I don't know where can i get help 😔, I feel so lonely 🥺 Because I don't sleep I get bad ahead ache, I spend my nights in restroom, already having problems with husband too..
I just found out that I have IC. Had so many test done. I only have bladder spasms which makes it feel as if I have a uti. I’m only 28 yrs old and I can’t take any medication because I got floxed by cipro and I’m trying to heal from it. So for me I have to try to treat this in a natural way. I just want to have a normal life again. It took my doctor six months to realize that she should send my urine to a lab and it turned out that I had a bad uti, and my last antibiotic which was cipro messed up my nerves and muscle, which is how I got IC.
@@judeandradez what I found out, is that when you take too many antibiotics it creates biofilm. biofilm is a slimy film that protects colonies of bad bacteria and that’s why the antibiotics can’t kill the bad bacteria because of the film that’s protecting it. That’s why the company Uqora,they have a biofilm disrupter but that’s a basic simple biofilm disruptor for people who feel that they’re about to get a uti, that way they can stop biofilm from forming before the uti gets worst. So if you’re antibiotic resistant, you can reverse it by killing all the biofilms. It isn’t permanent. Then apparently if you don’t take probiotics while on antibiotics,it can mess with your gut and poor gut health causes auto immune deseases
@@sneharoy5393 it took me for ever to find a good functional medicine doctor and man I’m making progress. I used to have to take dessert harvest aloe Vera capsules like 8-12 each day or else I wouldn’t be able to go out and about like a normal person. Now I no longer take those aloe capsules. Then my pubic bone area would be in so much pain and it felt swollen and when I would shower,the water falling on that area would cause pain and now I no longer have that going on. I also would be in extreme pain before and after my periods but I started taking FemGuard to balance my hormones and now the pain has been 4.5, before it used to be a 10 and would be crying on the floor with pain. I also don’t have pain every single day. Now it’s like 3times a month and it’s probably like a 4&sometimes 5 level of pain. I’m doing rectal and vaginal ozone therapy and that’s helping me get rid of biofilms and bacteria. I have so much biofilms coming out, like it’s just so freaking disgusting but it’s the truth. Im also going to start hydrotherapy colon cleansing because I have a lot of biofilms and the doctor said it will help flush it out. While I’m doing the hydrotherapy colon cleansing, I’m going to be on biocidin therapy(it’s a supplement that disrupts biofilm) to disrupt more biofilms and it’ll come out while the colon therapy lol gross but just keeping it real. One time I was peeing and I farted and felt something come out from my colon and it was 2clear balls of biofilm floating!!! I’m doing cryotherapy and red light therapy. I’m doing lots of gut cleansing and focusing on my back because apparently that can affect and cause certain symptoms that I’m having from ic cuz I did mess up my back before I got ic and ever since then I started having inflammation in pubic bone area and urethra. My doctor wants me to do a microgen lab test to see if there’s any yeast or any kind of bad bacteria, she also wants me to do a hormone lab test to see how my hormones are doing. I’m also taking pbc 157 pure to restore my ligaments and tissue. I’m also doing “grounding,” which is basically going outside getting some sun barefooted in nature/grass, you should really look into it. I’m also drinking alkaline water and no processed sugar and no processed food. Only grass fed beef and lean meats. I used to have a plant based diet with little to no meat and I am now eating meat. Specially red meat and it has helped me out a lot. My doctor and nutritionist both put me on a diet and I basically have to eat meat 3X a day because I lack of a lot of nutrients but eating meat has also helped out with the pain. I strongly recommend seeing a functional medicine doctor. It’s been very helpful. It’s just been a slow process. Before I couldn’t make it to my therapies and I would cancel them because of the pain and peeing a lot, and now I can go and do my therapies
Pelvic floor therapy is ongoing [forever] and not covered by insurance. My doc says my pain is neurological [no therapy will help]. He won't prescribe meds for it. Just sad,
I've had IC for 20 yrs it started with vulvodynia I always knew they were linked. Yet I am dying of pain and not being managed since there is no cure according to my urologist.
Does ic lead to bladder cancer? And if so how long does it take for this to happen. Ive had this condition for about 7 years and I read something on the internet that this is true.
We understand that you have concerns about IC and bladder cancer. Unfortunately, we don’t provide medical advice. Our resources are for educational purposes. It’s best to consult your healthcare provider for accurate information tailored to your situation. Take care. ~Vibrant Support
Is it possible to have a negative urine culture result but clear UTI markers on dip-in test strips ? This is what is puzzling me at the moment. Urologist never even mentioned IC but simply sent me to gyno for more insight....I had the feeling he wanted to get rid of me b/c I am not a man, not his "usual" clientele....so humiliating. Did not know IC is so common after all.
It's possible to have negative cultures but positive dipstick results - this can be confusing, but it's worth discussing further with a doctor who specializes in women's urological issues. ~Vibrant Support
That happened to me with home test but I wait a few hours to see if symptoms kick in or not. If I suspect uti I call to get lab test going. I’m journaling about this and I getting better at telling the difference. Also if I take azo bladder relief orange pills, wait 10 hrs and see if symptoms improve or not. If they do, then I had a flareup only. I had one last week from stress, took azo and next day felt no symptoms. Take care.
I have a question I’ve had interstitial and vulvadynia for at least seven years now and some of what you say is correct I have terrible food sensitivity, and now there are so many oxalates that I can’t have it’s even more restricting, but my question is and my Urologist has not been able to answer this after all this time how to get rid of the constant pain in my urethra itself after three Hydro distention, Botox injections, bladder cocktails I still have physical pain on a daily basis and it’s just so tiring. The only thing that seems to help is ice packs isn’t there anything they can do for the urethra, thank you Kellie
We are sorry to hear about your ongoing struggles with interstitial cystitis (IC) and vulvodynia. Dealing with chronic pain can indeed be exhausting. Here are a few suggestions you might consider: 1. **Consultation with Specialists:** Beyond urologists, consider seeking advice from other specialists, such as a pain management specialist, pelvic floor physical therapist, or a urogynecologist. They may provide a fresh perspective or alternative treatments. 2. **Pelvic Floor Physical Therapy:** Pelvic floor physical therapy can sometimes be helpful for individuals with IC and vulvodynia. A specialized therapist can work with you on techniques to relax and strengthen the pelvic floor muscles. 3. **Pain Management Techniques:** Techniques such as mindfulness, meditation, or biofeedback might help manage pain. These approaches focus on improving your ability to relax, which can be particularly important in conditions involving heightened sensitivity or muscle tension. 4. **Dietary Adjustments:** You've mentioned food sensitivities, and dietary changes can indeed play a role. Working with a registered dietitian who specializes in IC and vulvodynia might help you identify triggers and create a diet plan that minimizes irritation. 5. **Medication Review:** Discuss with your healthcare provider if your current medications might be contributing to the pain. Sometimes, adjustments or changes in medications can make a difference. 6. **Ongoing Communication with Healthcare Team:** Make sure you're in regular communication with your healthcare team. Regular follow-ups can help ensure that your treatment plan is adjusted as needed. Remember, these are general suggestions, and what works can vary from person to person. Always consult with your healthcare team for personalized advice based on your specific medical history and condition. ~ Vibrant Support
I was diagnosed with this about 2 years ago and some new symptoms I have been experiencing besides the burning and fire pain with urination is burning in my feet legs arms and hands. This feeling runs through out my whole body and it feels like when you stand on cement on a hot day and just stand there for a while and it begins to burn your feet. I have another feeling of pain in my feet but I can not find the word to describe it. When I told my doctor about this they told me that they never heard that happen with other patients. The pain that runs through my feet and hands etc worsens after I urinate….
ALTERNATIVE HERBAL TREATMENT CURED ME FROM CYSTITIS UTI AND FIBROMYALGIA, I TOOK THE MEDICATION FOR 21 DAYS🙏🏻🙏🏻 I WILL FOREVER BE GRATEFUL TO DOCTOR ISIBOR
Think lyme disease or co infections when you have IC, it's usually accompanied by all the symptoms of Lyme. Fibromyalgia, muscle cramps, migraines, gut dysbiosis etc.. I have IC and Lyme.
One thing I noticed for "me' is that when I started taking thyroid meds (NDT), my bladder issues went away (IC and then frequency - which started years ago before developing IC). Every time I stop the thyroid meds IC flares up. Just sharing my experience. 🙂
The link for "How to Find a Pelvic Physical Therapist:" doesn't work any more. Do you have any updated link or some other similar resource? My pelvic floor is too tight and the PTs mostly work with loose pelvic muscles.
ALTERNATIVE HERBAL TREATMENT CURED ME FROM CYSTITIS UTI AND FIBROMYALGIA, I TOOK THE MEDICATION FOR 21 DAYS🙏🏻🙏🏻 I WILL FOREVER BE GRATEFUL TO DOCTOR ISIBOR
Hi. My story emerged after I started receiving vaginismus treatment. Urologists told me that I may have damaged the entrance to my urethra due to the dilators. This made me very sad. Is something like this possible? My husband and I were absolutely devastated. Then an endless cycle began. I started urinating almost every minute. I constantly have urge to urinate. This feeling sucks. In addition, during the cystoscopy, wounds on my bladder and a prostate-like piece of flesh blocking my urinary tract were also found. I'm incredibly confused. I couldn't do the exercises I needed to do after my vaginismus treatment. My gynecologist insistently says that my urologist is exaggerating and that this will not lead to this situation. What I want to ask is, could our vaginismus treatment really cause this? THIS MAKES ME FEEL GUILTY.
I'm so sorry you're going through such a challenging and confusing situation. It's unlikely that dilator use for vaginismus treatment would cause urethral damage, but conflicting medical opinions can be incredibly frustrating. Your feelings are valid, but please don't blame yourself. Consider seeking a second opinion from a urogynecologist who can address both your pelvic floor and urinary concerns holistically. Remember, you're doing your best to take care of yourself, and that's something to be proud of. Sending you strength and healing vibes! ~ Vibrant Support
This is the biggest issue I see with the scientific community where they are focused on the wrong diagnosis. This is often the result of their thesis that they are so focused on proving right as part of their research that they've secured funding for. When you go to the clinic, they look at your demographics. Say, a person of 22 is experiencing cardiac arrest symptoms so they go to the ER. There, they get told everything is fine and the doctors refuse to do a thorough test of the patient because their insurance won't cover it. The patient dies of some sort of heart failure and it quickly gets forgotten about. No lesson is learned in the process. This is why I'm a strong believer of looking at the genetic history of each person as well as their life style and occupation. We have to look at where they come from. People who have more stress in their lives tend to age faster and have more health issues. Good clinics do this. We have to be looking at all possible outcomes and answers to a problem. Most do not.
I am so sorry to hear that. I want you to know that healing is possible. I recommend visiting a local pelvic PT for one-on-one support. In the meantime, feel free to check my Overcome Pelvic Pain program. You can grab the first week for free bit.ly/overcomewomenfree
I'm sorry you can't understand the video without Turkish subtitles. It's frustrating when language barriers limit access to helpful information, especially for a condition you've dealt with for so long. Keep looking for IC resources in Turkish - there might be some local support groups or translated materials out there. Wishing you all the best in managing your condition! ~ Vibrant Support
If you have been prescribed Uribel or have questions about its usage, it's best to consult with your prescribing healthcare provider or pharmacist. They can provide you with detailed information specific to your situation and address any concerns you may have.
Often times people with bladder and pelvic pain need to STOP doing kegels, and focus on releasing/relaxing the muscles instead. Talk to your physical therapist, and check out this video: th-cam.com/video/y2WQqgceYzM/w-d-xo.html
i dont know my condition but i don't have pain... it doesn hurt it's just overall inflammation and frecuency, ive had analysis done, no infections, no problems in my ovaries or uterus, a normal looking bladder through x-rays... i took medication but made me even more inflammed preventing me from peeing but not from feeling like i need to go, other medications cease the inflammation but make me dizzy and make my nose obstructed, they also dont stop frequency... the more inflammation the more frequency i experiment... I can evade it if i don't drink water but... i got to drink it, it's necessary, i also noted how it's only water that triggers the frequency due to how fast it's processed through the body... so my only 2 issues is inflammation and frequency, i've been like this since february... will it get worst? can i get cured?
I have what my doctor called bladder cramps…is it possible to not have frequency issues and still have the severe pain…I do go pee a lot…but I don’t see a correlation when having the pain and having to pee…I just pee a lot.
We recommend seeing a pelvic floor PT, if possible. Pain can have several causes (e.g. pelvic tension..). You might benefit from tension release workouts. ~Vibrant Support
Can it still be IC if i have only urgency to pee and was diagnosed with trigonitis with no infection,tried a lot of things nothing helped im 18 years old
I'm sorry I don't believe some of this. I have the actual lesions . I think IC is an issue and the pelvic floor dysfunction is an issue. Some do have physical proof of sores.
Yes I have physical sores. But you can lesions, u can have lots of pressure and no lesions or sore. But I do have the pics from my scope. I think they are different sub types honestly.
It's thyroid ! Always had bladder infections . Now I have no infection ,pain spasms whole 9 yards. I noticed since 2017 my TSH has been going way down. One lady commented a pinch of salt in water helps? I noticed no pain after I ate a bunch of salty cheese puffs.
My husband has a traumatic brain injury and it's wheelchair bound. I cannot get his urologist to understand my husband's pain. Bladder Botox did not fix it, as they thought it would. They just keep saying it's neurogenic bladder. Sometimes Motrin helps, sometimes not. I would love to speak to this woman.
I absolutely have both symptoms. I drank near 2 cups of water at 1am once a bathroom was finally available, & then passed out right after instead of going, woke up at 12:30pm & when I went I had no relief afterwards! And could tell something was severely wrong now :/ Yes it's been 10 days but I have a 1 in 100 million+ case of not being able to sit or stand very long so I know when things can be likely to never go away.
@@kusmarai7540 my ic was cured with a procedure done by a urologist/gynecologist whereby they broke the irritated bladder wall And put in medicine I don’t know what it is called.. then I did a diet with alkaline foods plus organic foods and still do it today.. How bad is your ic? having my hair fall out and having ic was so depressing I told the urologist and he did not believe me this Was way before I had the above procedure done I described..
@@uptick888 urologist did the cystoscope today for me but they don’t find anything ic is diagnosed by cystoscopy?? Coz I’m really hurting so bad but Doctor don’t give anything
Yesterday was the 4th time, once a week using Instylan. Frequency urinate has improved a lot, bladder pain reduces from scale 4 to 1-2, unfortunately the pain continues daily. I am a male 55 years suffering and diagnosed with IC 2 years ago
@@calsonyap8337 is nice to Hear some improvement, I hope keeps working , I received 10 , now there’s no pain but some days there’s frequency but just like 6-8 times per day and next day everything back to normal
Omg I have way more than 4-5 food triggers. All the classic ic diet no no foods cause so much pain. But those are also high histamine foods. Acidic and hot foods are mostly high histamine .
ALTERNATIVE HERBAL TREATMENT CURED ME FROM CYSTITIS UTI AND FIBROMYALGIA, I TOOK THE MEDICATION FOR 21 DAYS🙏🏻🙏🏻 I WILL FOREVER BE GRATEFUL TO DOCTOR ISIBOR
I got IC in 2018 and I took a holistic approach where I focused on getting my whole body healthy as well as I did Oxygen bladder therapy, lots of supplements and vitamins, minerals, amino acids and probiotics etc... After 4 months of excruciating pain it went away completely, In total remission. It stayed gone for 5 years and then I got a UTI and now I'm battling it again.
Hello Kaylene I know I'm a total stranger, but I'm gonna try to tell you anyway. I wish I could reach everyone! Was diagnosed with IC 16yrs ago, because I had classic smptms of infection - a painful persistent intense urge to pee, but -ve dipstick and culture. There is no scientific evidence to link these common symptoms to anything but UTI. Unfortunately, 90% of MDs still trust the unreliable tests to rule out infection. So the IC Myth was invented to explain things. And a significant number of UTIs continue to remain undetected. If there's no detectable abnormality viz. obstruction, cancer etc., you have a chronic UTI that has become embedded. It will keep showing up, even off and on, until you take appropriate antibiotics. The longer you leave it untreated, the longer it will take to clear. This IC diagnosis is an indication of disgraceful medical incompetence and negligence. And it's generating tons of business for PTs, Urologists and of course Big Pharma. Watch and follow Live UTI Free. They have a website and a TH-cam Channel. You can also read Cystitis Unmasked by James Malone-Lee, a genius LUT Clinician, who conducted a stack of research. All the best! 🤍
Nice overview but didn't get much to take away from this content beyond keeping a food log and seeing what your triggers are. for me, the #1 trigger turned out to be lactose-containing items like milk (even the "lactose-free" versions) and milk chocolate. weird it didn't start until my mid-50's. what's up with that?!? add it to the pile of things u have to change as u age i suppose.
Does anyone have any squeezing type symptoms of your bladder(low center abdomen) area when you get flare ups? I had those that came abs went during this past couple weeks dealing with these new symptoms. And I have had bladder spasms off and on lately also. I take cantharis and I have OAB as well. That helps the OAB. Since this so called flare up though, the cantharis didn’t seem to help as much as it did and I got that sweeping feeling. Then I don’t sleep well because I lay on my one side I have urge to Pee. I lay on my other side I have to pee and I get kinda that uncomfortableness. Not too much pain anymore but that like it can’t relax and I can’t sleep well. I sleep better on my sides and it’s like harder to with this. It’s sucks. 🤔
@@Garlicbredqueen I’m trying to do stretches/exercises and have done some before bed to help. I’m still not 100 percent I have IC but helps with bladder issues as a whole. Check out Dr. bri on you tube. She has good stuff. I hope to at least get diagnosed in what and what I don’t have soon. Take care. 😊🥰
Has anyone tried QHHT alkaline diet has helped me the most..... 8 years tried everything..... So only a strick alkaline diet works for me.... Going for QHHT hipnoses shortly.... Has anyone tried it?....
@@christiem0716 I had also endometriosis any my doctor told me I don’t have any endometriosis now coz she did last sep 30 in surgery and she said there is no any endometriosis but I’m really very bad pain on bladder and I give urine culture everything show always negative reports is this ic pain or endometriosis??
@@kusmarai7540 From what my Dr told me ( she is an endometriosis specialist) she said endometriosis always grows back since there is no cure and that IC and endo pretty much go hand in hand. But even if you don't have endometriosis it still can be IC which is really just unexplained bladder pain. But I would get a second opinion if I were you or see a different Dr -maybe a specialist if you can. I know for me, too much citrus fruits, cranberry, coffee or spicy food makes IC worse. I also take turmeric and take a probiotic and those seem to help the pain a little with both problems. I'm not a Dr but I have done a lot of research on my conditions. I hope this helps you and you can find some relief. Good luck! ❤
I have a feeling that my bellybutton and lower is on fire and painful…I don’t need to pee during these episodes any more than usual. I don’t have one…no incontinence. Doc says it bladder cramps and I have had the question…can you have bladder cramps without urgency.
Not just pelvic! Gut, respiratory, skin also. This condition has carved a big piece out of my life. Numerous urinary tract and sinus infections, gut pain, wheezing, bladder pain, headache behind my eyes, hoarse voice precipitated by coffee, tea, various foods and smells.
Everyone diagnosed with IC should watch this. Was diagnosed in 2005 and managed things well until this year. You can feel better don't lose hope. I panic when the pain comes back which really makes matters worse.
Thank you for sharing your story!
Me too!
Which treatments best work for you ?
@anahi andres Lots of Preleif, allergy medicine sometimes (children's benadryl), muscle relaxer, and don't get constipated. Did Elmiron initially, seem to help. But really relaxation worked most ,even trigger point injections .
How do you manage it?
God bless you both! I went on facebook just to find support and I found hopelessness, total restriction to diet, suicidal and very depressed people. I had to get out of there fast. I am having a rough enough time as it is with this! This video gives me so much hope! I don't feel like anything and everything is going to be a problem and my life is over like I did on the facebook groups about IC! Thank you!!
I've been dealing with this for a while and I'm very young. I just wanna find a good way to die right now
I left the groups too- best decision ever
The things you mention make so much sense! I’ve been in the IC battle for 4 years. I seriously hate living like this. I am malnourished as you said. The urologist told me to cutoff most foods and sent me on my way! The minute I wake up it’s, “ hope I can pee without pain”
Yoga for pelvic floor relaxation and lymphatic drainage has helped me and an organic diet, but Im looking for other exercises for the pelvic pain. This week the pain in my pelvis is intense. I’m excited to watch and hear some positive information for once!
PT did help but the pelvic specialist where I live was not very interested in continuing treatment that helped me. It’s a weird disorder that health professionals seem to be very callous about. I am not giving up hope after listening to your info!
God Bless you both!
I am glad you are finding some relief in your symptoms. My Overcome program provides guidance for soothing both the mind and body and great lifestyle tips. You can get the first week for free bit.ly/overcomewomenfree
Had it for 4 months, horrible! I used a castor oil pack. I looked it up and sure enough, it works great, not overnight, but it does work. I put a high quality castor oil on a large bandage and stuck it right on the bladder area and my lumbar spine. i wore it overnight for about 3-4 nights. A castor oil pack is also available online and can help SO many other things. Cysto Renew is a great product too!
Thank you for sharing your experience. If you feel tension is the culprit, I invite you to explore my free tension release playlist bit.ly/femtension
Do you use heat as well ?
Hi why did you also place it on your lumbar spine ?
I am blown away that you've made the link to histamine!! Bravo. I have been asking doctors for more than a year now about the histamine/bladder link (also its link to sinus and asthma issues). So far, nobody knows or is interested. You're ahead of your time.
J Ro docs suck
My Urologist prescribed Hydrozine (Antihistamine) and I
have seen relief with it.
Same. I suffer from pretty unpleasant allergies and I have IC. My old urologist would prescribe me montelukast. Looking back on my childhood I did have worse pain at times of year when my seasonal allergies were worse.
@@I-must-scream wow! I’m gonna have to pay attention to allergies & bladder symptoms!
@@chrisstyle1464 how are you doing with that medication ? Still working ?
Thank you so much for this video, I'm 33 and have suffered from IC and pelvic pain since I was 19 and it is only now with the help of an osteopath and the Dr. Bri pelvic exercise Videos that I realized that there is so much to learn on this condition and heal in completely natural ways. I have just been told by many many (male) doctors to just take antibiotics which did not do me any good!
So glad that you're finding the resources you need!
Did u heal?
Literally was just told today that I have this and I should find support groups. These support groups are almost entirely suicidal, negative, and hopeless. Great. I feel better already.
Yes ,people are so negative in IC group ,I avoid it
You must be in the wrong group. The admin in the one I’m in taunts hopefulness and positivity. It’s been very helpful when I’m feeling down.
@@nancybropst9869 what group are you how do I find something like this?
@@opheliam2902 I can send you an invite but I need your last name
@@nancybropst9869 hi is this an online group as I'min England. I've had IC for 3 months now and would love to find a group. Thanks Jude
I am crying for joy watching this video and will buy your book! You gave my hope after another flare up yesterday. Thanking God for Azo too got me through the day selling with my husband his rustic art at our farmers market! Hopeful from Oregon❤my daughter’s name is Brianna too and she works in mental health..God bless you both with this video of hope!!
I'm so touched that this video brought you hope and joy - thank you for sharing your story, and I'm thrilled to be part of your healing journey!
I have suffered with IC for over 20 years. I am 70 years old now and I have recently been prescribed a hormone pessary by my GP. Oh my goodness, the IC has completely gone! After all those years of suffering,I can hardly believe it. It’s like a miracle. But why did I have to wait 20 years for a cure when the answer was so simple.
It's wonderful you've found relief, and your experience highlights the importance of considering hormonal factors in pelvic health challenges. ~ Vibrant Support
@@lilysmith8001 I have never heard of a hormonal pessary. Thank you for sharing that
How when you cure? Can you help me because is not easy to sufferd in this condition
Hi, i teresting,but what exactly do you mean by hormone pessary?
@@chaya8122 oestrogen pessary inserted twice weekly
This was SO HELPFUL! I am determined to put my symptoms into remission this year.
We are rooting for you. You can do it !! ~ Vibrant Support
The biggest myth is that IC is about the pelvis-it is a whole body issue-with fibromyalgia, migraines, nocturia, vuvodynia, and chronic fatigue-that is noticed in 80 percent of patients-if only the pelvis is considered, you are not seeing the whole picture. In Canada, it is listed as a symptom of Lyme disease.
Thank you for sharing this!
Wow that makes total sense. I have been diagnosed with IC, endometriosis, fibromyalgia, chronic fatigue,nocturia and chronic migraines. And have came back positive for 3 Lyme panels but I guess you have to be positive for 5 out of 10 ( in US anyway) to be diagnosed with actual Lyme disease .That's crazy. Thank you for the information 😊
Wow thank you for saying that! I have Lyme disease as well.
I also have Lyme Disease, and CI,IBS, demyelinating polyneuropathy, epilepsy, ets ets .... But this is the one that cause more pain
I also have IC and Lyme disease @@trexbuddy
I just wanna tell everyone else dealing with this to not give up hope, because I know how hopeless it can feel
Hi there. Thanks for your precious advices. How is it going 8 months later?
Hey! I just read your comment here. I am in exact same situation reading it was like reading about myself. I am dealing with it for about 8 months now. I was curious if anything brought you a relief and in general did you manage to figure out your triggers?
I suffer greatly since 2012 and in pain management and still is a nightmare. Cannabis does help. It’s legal in my state for medical reasons.
Professor James Malone-Lee is curing it with long term antibiotics, urine test & cultures miss many infections, there is research showing this online.
@@Ida-Adriana I’m so much suffering bladder pain but Doctor don’t give any medicine ic is cured by antibiotics if so which one is to better to take antibiotics plz help me ??
@@kusmarai7540 don’t take antibiotics for IC! Only if you have a UTI. antibiotics will not target most chronic health problems. IC is a chronic health disorder.
@@kusmarai7540
It cannot be cured by antibiotics. You have to reduce stress level and find out which food items flare up your symptoms and restrict it . And do meditation’s and exercises . This drug only relief the symptoms Elmiron 100mg bd for 3month duration . This will definitely help .
No pain management for this or legal cannabis in my state.
Hello all, I was diagnosed with interstitial cystitis for many years. Nothing helped, not the traditional treatment, not the antibiotics. I´ve been on vaginal HRT (hormone replacement therapy, estrogen) for 6 months now and the pain stopped within the first few days. Please note that postmenopause can be the reason for those symptoms.
Thank you for sharing your experience - it's a great reminder that hormonal changes can significantly impact pelvic health, especially post-menopause. ~ Vibrant Support
My chiropractor also said that if you have sacroiliac joint issues it can also cause some of the bladder pressure and urinary pain - they share a nerve that affects this
That's a great point - the connection between sacroiliac joint issues and bladder symptoms highlights how interconnected our pelvic region really is. ~ Vibrant Support
I have listened to so many people and this woman is true!! I have had IC for thirty years now !! ❤
Glad this interview is helpful. ~ Vibrant Support
what are your remedies please?
So are you saying the doctors diagnose this mainly by symptoms? My endo surgeon said he does a diagnosis by taking a sample from the bladder. Diagnosis on symptoms alone seems like the likelihood of these misconceptions will be higher. I was diagnosed with IBS for 10 years based on symptoms alone. And after it lead to issues leading to surgery, they found endometriosis on my bowels and chronic appendicitis. I am now forever leery on diagnosis based only on symptoms...
It is typically diagnosed based on symptoms. It's a condition that we're still learning more about!
They rule things in ad rule things out and then make an educated guess
This is such a good and helpful video. I basically have had this for YEARS, probably about 20 years!😢 During that time, doctors didn’t do much, but I figured out the histamine link, and also clearly have some kind of inflammation issue with my skin. I also have issues with histamine releasing foods and pain. I’ve gone back to the doctors recently to see if I can get a proper diagnosis, but I just don’t think they will label it as IC, but will see. Have literally just bought Nicole’s book!
I'm glad to hear you found the video helpful! It's often a challenging journey to identify and manage conditions like Interstitial Cystitis (IC), especially when they have a range of potential triggers and symptoms. Working with healthcare professionals who understand these conditions and taking a proactive approach to manage your health, including dietary considerations and lifestyle changes, can be key to finding relief and improving your quality of life. Nicole's book can provide valuable insights and guidance on managing IC, so I hope it proves to be a valuable resource for you. Best of luck on your journey to better health and well-being!
20! Wow, I can see that as I’ve gone 8 with its varying levels. Sending you uplift
I have read that low estrogen can also affect the pelvic floor. I have hypertonic bladder I think.
Me too. I know I am hypersonic because I go to pelvic floor therapy and was diagnosed. I am on Vagifem
Estrogen is the only thing that stops mine. Aloe Vera juice helps
Im chronically depressed about this condition. I feel like its damaging my only positive relationship.i feel like it has ruined my life and I'm hopeless :,(
my life has come to a standstill ,
I couldn’t agree with you more. This condition has messed me up physically and emotionally. I feel hopeless and hope we all find a cure or something to help us. So lost in this battle
You can control it with diet. I've done it.
I've IC for three years, I've controlled my IC though eating a whole food plant based diet made up of purely organic food and intermittent fasting, you need to overhaul your whole life style. Get rid of everything that isn't whole plant based food, for example refined sugary foods like cakes and cookies and things like refined bread and pasta. Also remove anything toxic such as alcohol, smoking and caffeine. Replace all of the toxic things with a wonderfully healthy diet which will make you feel good in the long run. This diet should include gluten free whole grains such as rice, quinoa and amaranth, healthy organic veg of all colours but especially dark leafy green vegetables, legumes like lentils and beans plus healthy fats from nuts and seeds. If you are struggling with giving up toxic substances as I was, it may be worth seeing a counsellor to help you through. Intermittent fasting is essential to give your body a chance to heal Check out the Happy Pear of inspirational recipes, not everything on there is suitable but there are loads of great recipes which will help. It takes a while to get your larder in order, but it's worth it in the end. th-cam.com/users/thehappypearvideos
How horrendous life can be with lC. Have had every test possible over 16 years . Haven’t had a diagnosis yet ! But this is so it . Verterbrae damage c5 6 7 and 8 . Affect the nerves.looking into this being base of my problem 😊
I'm caucasian, male, going on 80 years old, and I have had either Chronic Prostatitis or Interstitial Cystitis for about three decades. I'm being treated for Chronic Prostatitis symptoms that may really be Interstitial Cystitis symptoms. The truth is that many doctors don't seem to know the difference between the two conditions. I tend to disagree with the claim that none of the pain can be in my head when on some occasions it definitely appears to be. When I'm in a car, driver or passenger, I sometimes realize that my bladder is beginning to feel like I might need to pee. Within minutes I get a terrific pain that usually cannot be remedied except to wet my pants or stop the car and jump out. Or my brain will divert the painful urge for minutes or an hour until I can find a restroom or until the painful urge comes back again. Likewise, when I get to the restroom I may stand by a urinal or sit on a stool for several minutes and little or nothing will come out, even though the pain is still very much apparent or not. I have learned that I must breathe slowly and deeply and relax my body, and slowly the urine will begin to flow, often at a healthy rate. Even when I have a good flow, my bladder may only be about half empty when the flow stops, and generally the flow won't start again, even if I try relaxing more. If I press firmly on my abdomen about 2-3 inches below my bellybutton, I will usually get the painful urge to go again and empty more of my bladder. When traveling, this extra effort takes time but may mean that I have a better chance of finding another bathroom before the next painful urge enters my brain.
I am sorry to hear that. I hope you find a supportive pelvic floor PT. In the meantime, you can check these resources bit.ly/femtension ~ Leila from Vibrant Support
It feels like its burning slowly with fire
Bowel malfunction can cause the bladder over work to get rid of the waste.
I have IC but an abdominal exploratory surgery in the 1960s left extensive scar tissue in my lower stomach and pelvic area which has since hardened and become inflexible and caused problems and pain with my connective tissue as well. Pelvic floor exercises have helped tremendously, too. I also have migraines and food allergies which I believe contribute to IC and pelvic floor pain.
Thank you for sharing! I am sorry that you have been dealing with this!!
My urine is always positive for leukocytes and negative for nitrites so how can my bladder be an innocent bystander?
Just like mine
I’ve had this condition since 2012. Scene every Dr imaginable and nobody besides an ER Dr suggested I have it. Had a very painful cystoscopy with no lesions therefore was told it’s not IC. 😡 I have all the symptoms of IC. Why can’t I get a diagnosis???? It’s horrific! And has ruined my life!
Hi Tamara .research nerve damage . Vertebrae damage causes pressure on the nervous system leading to bladder problems. Check out Vagus nerve compression. Good luck.
I’ve suffered for 16 years .it does ruin your life ! I just found this information so here’s hoping 🤞
@@kellie4225 how to reverse it though ?I do have quite painful neck but my bladder issues started 3 weeks ago
@@Србомбоница86 no pain but its uncomfortable . I’ve started using one of the pump up neck cervical stretches and have gotten a little relief. My night time toilet trips have reduced. I find if l eat chocolate or have any sugar my nights are hell .. every IC system but no urologist can help .. l have had 4 😌.. MRI was done and l have a pinched nerve and marrow pressing onto Vegas nerve . Check out Dr Mandel on here he’s brilliant. Good luck. It’s horrible to live with research as much as you can 🙃
I've had it since 2012 and it ruined my life too.
Thank you so much! I feel encouraged now! I will definitely be buying your book! Everything you said made so much sense to me!! Thank yoi
You are so welcome! I am glad my content resonates with you :)
Totally agree with the food advice. I am super sensitive to some foods but I do have some “safe foods” I love this video
Glad you have safe foods on your side ❤️
I think I may have this I was constantly going to the doctors before I was diagnosed with endo but I also had urine tests all the time because because of burning when I pee and it's happening again, the tests keep coming back clear I get so frustrated I say to my gp I am not friggen making this pain up.
Get your doctor to give you a referral to a urologist after seeing 21 doctors in different clinics and trips to the er this is what they are looking at for me tho they said I need to do a test for endometriosis also but good luck dont give up
Professor James Malone-Lee is curing it with long term antibiotics, urine test & cultures miss many infections, there is research showing this online. Are you in the UK? He's based in London.
Hi Carrie . Did you have the endometriosis removed, and notice a difference?
@@melinda7425 I have had it removed 2 with no relief.
@@carriejones6109 That's what I am afraid of. My gyno is telling me to have the endometriosis procedure done. But the thing is I never had IC/ BPS until about 4 weeks ago. It all started after having a Cystoscopy. I would hate to go through another procedure for nothing. Especially since one I just went through messed me all up.
Coming from the male perspective I can confirm much of what Nicole had to say. IC in men is not only a bladder thing....but affects the prostate and the guts as well. I have had it since 1982. Some people have gotten better but for most some version of what you have now, you'll live with forever. It's not curable but it is treatable. IC has two components. The autoimmune and the pathogenic. (The latter may come as a surprise as you won't find it in the books.) Which comes first, the autoimmune or the pathogen? I don't know but I suspect the immune problem comes first. The pathogen is called gaffkya. It's a common bacteria but for some reason it proliferates and attacks some people, hence IC. It lives inside the meat of the bladder. It is insidious.
When you give a pee sample and it comes back blank there is a reason. Gaffkya is not checked for. In short it is hard to culture. If you're curious I'll explain further. I wrote a book that covers all this but I'm not here looking for customers. You ask, I'll tell you where to look. This pioneering work was done by Dr. Paul Fugazzotto a couple of decades ago but it never took off, partly being his own fault. I believe in his work, the same as I believe so much work by the learned college gurus into IC was mostly to keep the til jingling.
In conclusion, you're not likely to get rid of your IC. There is as much of a lack of good info and misinfo today as there was in 2000. Your best bet is to determine to LIVE with it. Survive it. Don't let it beat you. YOU know what's best for you. Trust in yourself. Determine the foods that are making you hurt worse and eliminate them. Learn from others who have had success. Share your successes. Discussion is a MUST....and a thing sorely lacking these days. Twitter-like messages just won't cut it. Find a support group that actually shares and participate. Don't be stubborn and don't do drastic. Start in the little things (like food and substance identification). Keep track of what you eat and when. Study yourself!
There is no miracle cure out there and I don't think one likely. Sit back and wait for others to solve YOUR problem at your peril. Believe in yourself. Live with IC. Beat it, or it will beat you. Live.
Where could I access this book that you wrote?
Thank you for asking! You can find it here: amzn.to/3gk8w9P
@@mansfield61 It's called The Pioneers Of Interstitial Cystitis by Norman Morrison
Ovgraphics. What do you think of Elmiron and botox treatments?
@@hamudydudy9785 Don't know a thing about Botox HD. I was around when Elmiron came out. Never tried it. (With no evidence) I always thought it was a gimmick. We've always had the most bizarre quack cures from the mercury bladder wash to DMSO. If it hurt they tried it even to removing the bladder. MY constant was always less is better than more and if it hurts...quit. I explain all this in my book which is a compendium of our very early support group. THE PIONEERS OF INTERSTITIAL CYSTITIS. It's as cheap as I could make it (as low as Amazon would let me go for print, anyway.). Much in there is still good and valuable info. GREAT hearing from you. Don't be afraid to experiment and remember...if it hurts...quit.
I’m a 35 year old male and this helps a lot. Been to the dr. many times as this comes and goes. This all males sense.
FASHIONfordable for me it’s not IC. Been through hell since I posted this 8 months ago. But it woke me up. It’s definitely a pelvic floor problem. Been stretching and working my body daily. Helps a lot. Way less symptomatic.
How do you guys know? Did they check the inside of your bladder with a cystoscope for lesion or ulcer or whatnot?
@@SUPER_JAVI no. I figured it all out. It’s muscle tension. Pelvic floor and hip problems from sitting too long for years working. Saw a physical therapist and work out. It’s 95% better. Got my life back. It just takes a lot of time and effort.
@BANK BREEZY fast biz funding (independent agent) you were right. Saw a PT and started going to the gym. Much better
@@bebrave9108 thanks. I sit for work all day, been a long haul trucker for too long. I think that's what it is.
I’m 31 and just got diagnosed with this after my doctors thought I had an antibiotic resistant UTI. After my UTI didn’t get better after multiple rounds of antibiotics, they found there was actually no bacteria in my urine. At which point they told me to go to the ER. I did not need to be in the ER.
We are sorry to hear about your challenges. We recommend seeing a pelvic floor PT for individualized guidance and extra support . ~ Vibrant Support
I've had chronic UTI's since I was a child. Years later I've since been diagnosed with Hasimotios, autoimmune arthritis, liver disease, Sjogrens, Crohns and Renaud's. The last few years I've been getting what feels like a UTI but my urine shows no infection. My new female Dr. just told me the other day she believes I could have IC. I've never even heard of it before. The last urine culture has 10-15 epithelial cells (which I know how to do a clean catch so I don't know), a trace of ketones, 30mg of protein, higher PH and crystals. Other than than...normal. I'm just so tired of everything!! :(
We are so sorry to hear about your symptoms. You might benefit from gentle tension release movements to alleviate some of the discomfort you are experiencing. ~ Vibrant Support
I have had IC for 24 Years. Its severe pressure and feeling inflamed in my bladder . Also.. Have blood in the urine only detected by a urine test.
I am sorry to hear that. I hope you are finding some relief.
Thank you for this video!
You are absolutely right. It is nervous system. I take hemp oil
Amazing video thank you so much.
Nice video Thanks for sharing
The ic diet was everything for me and not even close to restrictive compared to the diet I have to follow! I now follow low histamine . Histamine is def the driver of ic for many .
Hi how did you find the histamine diet ? Still working for you ?
Wow, thank you for your work and for this, I just ordered your book before I saw this !
Wonderful! You are going to love the book! ❤️
@@vibrantpelvichealth I DO love the book!
I was diagnosed wIC37 years ago can't standtgeflare ups burning up all going to bathroom all nights!got this I wenttoa femaleurologist who gave me cipro which had reaction and it burned my bladder I hadi instillationsof medicines 4xit helped we away
But I canter anything gnome fasr foods only what I
Make myself it's the most depressing thing!
I hear how exhausting these IC flares are, especially with nighttime bathroom trips and strict diet limits. It's so challenging, but don't lose hope - many people find better ways to manage IC symptoms over time. 💜
I have been having a painful flare up for over a week it’s horrible😣
I just started the DMSO today. It was so painful all day long. Talk about burning holy cow I was in tears. I’m so frustrated as none of this information has ever been mentioned to me.
I’m learning more from this video as well as Dr Bergs video I came across last week.
I have 7 more treatments to go of the DMSO. I’m dreading it if I have that same amt of pain going forward.
I’m planning on PT next for pelvic exercises. Have no idea what that means 😩🤷♀️
We hope you feel better soon and wish you good luck on your path to better health ! ~ Vibrant Support
How do you know if you have it? How do you get diagnosed ? I have the urethra burning and irritation but not pelvic pain. Someone help please 😢
I just changed obgyn docs to one who actually listened to me & she referred me to a urologist for what she thinks is IC.
You would need to talk to your healthcare provider for guidance. ~Vibrant Support
Thank you so much for this 😭😭😭❤️
you are more than welcome ! sending you a hug!
It's loads of fun🎉
I have recently had symptoms and took at home uti test because I don’t have insurance. And it looked negative. I’ve taken them before at home when. I used to get frequent utis and those went toward the brown pinkish positive colors. So I was like ok this time I don’t have uti supposedly but some symptoms so what is it? When I had a Dr-she is a nurse practitioner, the last times I felt uti symptoms I did the tests and culture abs was negative so I was like ok maybe it was my over active bladder or my back because my back sometimes bothers me due to a hernia and other spinal things I can’t pronounce. And the pain would radiate in my abdomen and pelvic but looking back it could have been ic flare up.
It’s interesting my doc didn’t refer me to a urologist or look into if I had IC after I tested negative for uti. So dumb. And I should’ve gone to one now I dint have insurance.
So I went through wisp and got a Dr via telegraph for low cost and am in bactrim for seven days so I have that for now and taking Prelief again b/c I got that awhile back because I had a acid reflux flare and had to do that diet and found Prelief and noticed it was also for this IC. And I am changing my diet. I havnt had cold brew coffee in a few days although I’ve heard it was a lot less acidic than regular coffee. A lot of acidic foods I’ve cut out or cut down in anyway because I’ve dealt with acid reply’s/GERD/heartburn.
Acidic foods give me flare ups, especially cranberries
I have had IC since I was 18 and am now 70. Nothing has changed in treatment plans in all those years. Elmiron is nothing new, I took it 30 years ago. I have drifted in and out of flares my whole life with nothing really being a long lasting help. I am currently into a flare that has lasted 1.5 years with the occasional day of relief. I have discovered over the years as my Rheumatoid arthritis flares so will my bladder. IC is part of the autoimmune family of diseases. I love the optimism of the two ladies, and nice to see younger health professionals trying to help, but they have not presented anything new that IC patients have tried over the past 50 years that I have tried to managed the pain to varying degree of success.
ALTERNATIVE HERBAL TREATMENT CURED ME FROM CYSTITIS UTI AND FIBROMYALGIA, I TOOK THE MEDICATION FOR 21 DAYS🙏🏻🙏🏻 I WILL FOREVER BE GRATEFUL TO DOCTOR ISIBOR
@@alexischarlotte4685 I am so glad you found some relief. Did you increase your water intake while taking this herbal treatment ?
@@seaside2001 I FOLLOWED DOCTOR ISIBOR INSTRUCTIONS THAT HELPED ME, I TOOK WATER 💦
@@alexischarlotte4685 hi what type of herbs did you take that help you if you don't mine me asking thank you.
I agree that just like eczema each person has different foods they can’t eat. I eat tomato products and I haven’t noticed an issue. So I definitely believe people need to pay attention to what they eat by journaling. I have a rife machine and it has frequencies for this condition, so Ive been running these to see if I can clear it.
Thank you for sharing your insights !! Healing should always be personalized to fit our unique needs. ~Vibrant Support
I just bought her book. I hope it helps. This is hell.
I hope you are feeling better !
I learned about the diet didn't work a while back . Is like she says .. is individual
Thank you!
What are the ton of stuff that we could be doing instead of taking medicine? I know you mentioned physical therapy but what else?
Please watch the video for the full information on alternative approaches. ~ Vibrant Support
Tomato's trigger me terribly. I got it from taking mucinex a few years ago.
Sorry to hear that
I think I've had IC for about 20-25 years but I was only recently diagnosed. Prior to the diagnosis I was positive there was a problem, but all tests came up negative. All I could describe it as was .... like my bladder wasn't a taut elastic pee holder that shoots a mile, but rather it felt like a wet sponge. Sponges don't snap back empty, they just hang there half full of HOT piss and it's that hot gotta pee feeling that will drive you to the doctor (who can't do much for you)
It's a difficult condition to have. Sleep is all but impossible - Christ I get up 30-40 times per night. I gave up on the doctor for this condition but I see that @Laura Maria Scapin is having luck with an Osteopath and that'll be one of my last tries before I put the wing suit on.
I have this feeling of warmth/burning in my pubic region and urethra before and after pee and it sometimes lingers for hours. I haven't been diagnosed yet. How are you managing?
Have you tried the IC diet? I'm just now trying it.
So depressing. I’m gonna go radical soon and do a medical break. I can’t take it. Holistic( barring oxalates) here I come.
We are sorry to hear about your pain. We encourage you to consult your healthcare provider for individualized guidance. ~ Vibrant Support
I am just coming across your video, this morning. I have tried everything known to man for IC. I am not in the average box of people who have IC. I was diagnosed after my bladder was ruptured during a C-section, so according to the doctors IC is the result of that. I am annoyed because, no study will take me and no meds seem to work. And as I've gotten older at times I feel like I have no feeling in my bladder and I'm losing control along with no sleep, since I constantly have pressure and pain no matter what I do... Any advice you can give me would be great! Thanks for the myth busting on this condition. It's very helpful.
I am sorry to hear about your challenges. I recommend working out with a pelvic floor PT for individualized guidance
@@vibrantpelvichealth I will continue with that as planned. Thank you
IC is the biggest myth. No evidence to supports its existence or it's etiology. Invented by lazy doctors and perpetuated by greedy PTs.
Unless you have a structural abnormality, 99% chance you have a chronic UTI which is being missed by insensitive meaningless tests like dipstick and urine culture.
Follow and watch Live UTI Free or read Cystitis Unmasked by James Malone-Lee. 🙏
Please do a video with Dr. Angel Johnson of Greater Boston Urology if she's willing. She's a urogyn and specializes in pelvic floor pain and prolapse. She's my doctor and has helped put together a team to treat my chronic UTI and pelvic floor issues. I was born with bladder extrophy and she explains things in plain English and makes her patients extremely comfortable.
Great to hear! Thank you for sharing! Glad you have a team to help and support you!
Hello my name is Marina. I have been suffering from interstitial cystitis for 2 years..I was diagnosed 2 months ago. My urologist said I have a lot of red dots in my bladder. I also have pain in my left hip/bottom. I have a constant urge to urinate, even when my bladder is empty. I can sleep well at night. Can my pelvis be to blame for my problem. I'm from Germany and I'm looking for help everywhere.
I have this problem for 10 years, everytime I go Dr. I always get tested for infection, it comes back negative,
The Doctors don't have ideas, then think it mentally, that' nothing wrong,
My uti, comes go , there's day it painful, it burns 🔥, so bad, I night I can't sleep, I have to get up like 20 times to go restroom, my bladder don't empty anymore, I go just a little drop comes out, but it burns, my back hurts, I'm so frustrated, the only way I can rest a little to be able to sleep is by putting pressure in my bladder, so I sleep on top of my stomach, by 5am, I'm in so much pain, I have to run 🏃♀️ to restroom,
I can't go back to bed because I'm in the restroom pee, 3 time oh 4 times at same time, so I'm in side the restroom for 35 minutes, pee..
It so difficult, I don't know where to get help, my Dr just says he has never heard about it, so I when to others Dr, she thinks it stress, she tells me I need to relax and breathe, and try to lost weight..
A other Dr told me it mentally maybe I'm suffering depression oh of something,
My family don't understand, then think I'm trying get attention,
I don't know where can i get help
😔,
I feel so lonely 🥺
Because I don't sleep I get bad ahead ache, I spend my nights in restroom, already having problems with husband too..
Hi, check out the TH-cam page of dr. Lonnie Herman. He says he can cure interstitial cystitis.
hi how are you right now?
@@yeseniaanaya331
I just found out that I have IC. Had so many test done. I only have bladder spasms which makes it feel as if I have a uti. I’m only 28 yrs old and I can’t take any medication because I got floxed by cipro and I’m trying to heal from it. So for me I have to try to treat this in a natural way. I just want to have a normal life again. It took my doctor six months to realize that she should send my urine to a lab and it turned out that I had a bad uti, and my last antibiotic which was cipro messed up my nerves and muscle, which is how I got IC.
It was the same for me. Overuse of antibiotics messed it up. How are u doing now?
Try the amino acid L-ARGENINE, 2 MG per day on an empty stomach. It works for me. I also took Cipro and messed me up.
@Sneha Roy I had 4 different types of antibiotics for a UTI and wonder if that's what caused it!
@@judeandradez what I found out, is that when you take too many antibiotics it creates biofilm. biofilm is a slimy film that protects colonies of bad bacteria and that’s why the antibiotics can’t kill the bad bacteria because of the film that’s protecting it. That’s why the company Uqora,they have a biofilm disrupter but that’s a basic simple biofilm disruptor for people who feel that they’re about to get a uti, that way they can stop biofilm from forming before the uti gets worst. So if you’re antibiotic resistant, you can reverse it by killing all the biofilms. It isn’t permanent. Then apparently if you don’t take probiotics while on antibiotics,it can mess with your gut and poor gut health causes auto immune deseases
@@sneharoy5393 it took me for ever to find a good functional medicine doctor and man I’m making progress. I used to have to take dessert harvest aloe Vera capsules like 8-12 each day or else I wouldn’t be able to go out and about like a normal person. Now I no longer take those aloe capsules. Then my pubic bone area would be in so much pain and it felt swollen and when I would shower,the water falling on that area would cause pain and now I no longer have that going on. I also would be in extreme pain before and after my periods but I started taking FemGuard to balance my hormones and now the pain has been 4.5, before it used to be a 10 and would be crying on the floor with pain. I also don’t have pain every single day. Now it’s like 3times a month and it’s probably like a 4&sometimes 5 level of pain. I’m doing rectal and vaginal ozone therapy and that’s helping me get rid of biofilms and bacteria. I have so much biofilms coming out, like it’s just so freaking disgusting but it’s the truth. Im also going to start hydrotherapy colon cleansing because I have a lot of biofilms and the doctor said it will help flush it out. While I’m doing the hydrotherapy colon cleansing, I’m going to be on biocidin therapy(it’s a supplement that disrupts biofilm) to disrupt more biofilms and it’ll come out while the colon therapy lol gross but just keeping it real. One time I was peeing and I farted and felt something come out from my colon and it was 2clear balls of biofilm floating!!! I’m doing cryotherapy and red light therapy. I’m doing lots of gut cleansing and focusing on my back because apparently that can affect and cause certain symptoms that I’m having from ic cuz I did mess up my back before I got ic and ever since then I started having inflammation in pubic bone area and urethra. My doctor wants me to do a microgen lab test to see if there’s any yeast or any kind of bad bacteria, she also wants me to do a hormone lab test to see how my hormones are doing. I’m also taking pbc 157 pure to restore my ligaments and tissue. I’m also doing “grounding,” which is basically going outside getting some sun barefooted in nature/grass, you should really look into it. I’m also drinking alkaline water and no processed sugar and no processed food. Only grass fed beef and lean meats. I used to have a plant based diet with little to no meat and I am now eating meat. Specially red meat and it has helped me out a lot. My doctor and nutritionist both put me on a diet and I basically have to eat meat 3X a day because I lack of a lot of nutrients but eating meat has also helped out with the pain. I strongly recommend seeing a functional medicine doctor. It’s been very helpful. It’s just been a slow process. Before I couldn’t make it to my therapies and I would cancel them because of the pain and peeing a lot, and now I can go and do my therapies
Pelvic floor therapy is ongoing [forever] and not covered by insurance. My doc says my pain is neurological [no therapy will help]. He won't prescribe meds for it. Just sad,
I am sorry to hear that. Don’t hesitate to ask for a second opinion.
I've had IC for 20 yrs it started with vulvodynia I always knew they were linked. Yet I am dying of pain and not being managed since there is no cure according to my urologist.
I am so sorry you have been going through this!
Hey how r u now?
Does ic lead to bladder cancer? And if so how long does it take for this to happen. Ive had this condition for about 7 years and I read something on the internet that this is true.
We understand that you have concerns about IC and bladder cancer. Unfortunately, we don’t provide medical advice. Our resources are for educational purposes. It’s best to consult your healthcare provider for accurate information tailored to your situation. Take care. ~Vibrant Support
Is it possible to have a negative urine culture result but clear UTI markers on dip-in test strips ? This is what is puzzling me at the moment. Urologist never even mentioned IC but simply sent me to gyno for more insight....I had the feeling he wanted to get rid of me b/c I am not a man, not his "usual" clientele....so humiliating. Did not know IC is so common after all.
It's possible to have negative cultures but positive dipstick results - this can be confusing, but it's worth discussing further with a doctor who specializes in women's urological issues. ~Vibrant Support
That happened to me with home test but I wait a few hours to see if symptoms kick in or not. If I suspect uti I call to get lab test going. I’m journaling about this and I getting better at telling the difference. Also if I take azo bladder relief orange pills, wait 10 hrs and see if symptoms improve or not. If they do, then I had a flareup only. I had one last week from stress, took azo and next day felt no symptoms. Take care.
I have a question I’ve had interstitial and vulvadynia for at least seven years now and some of what you say is correct I have terrible food sensitivity, and now there are so many oxalates that I can’t have it’s even more restricting, but my question is and my Urologist has not been able to answer this after all this time how to get rid of the constant pain in my urethra itself after three Hydro distention, Botox injections, bladder cocktails I still have physical pain on a daily basis and it’s just so tiring. The only thing that seems to help is ice packs isn’t there anything they can do for the urethra, thank you Kellie
We are sorry to hear about your ongoing struggles with interstitial cystitis (IC) and vulvodynia. Dealing with chronic pain can indeed be exhausting.
Here are a few suggestions you might consider:
1. **Consultation with Specialists:** Beyond urologists, consider seeking advice from other specialists, such as a pain management specialist, pelvic floor physical therapist, or a urogynecologist. They may provide a fresh perspective or alternative treatments.
2. **Pelvic Floor Physical Therapy:** Pelvic floor physical therapy can sometimes be helpful for individuals with IC and vulvodynia. A specialized therapist can work with you on techniques to relax and strengthen the pelvic floor muscles.
3. **Pain Management Techniques:** Techniques such as mindfulness, meditation, or biofeedback might help manage pain. These approaches focus on improving your ability to relax, which can be particularly important in conditions involving heightened sensitivity or muscle tension.
4. **Dietary Adjustments:** You've mentioned food sensitivities, and dietary changes can indeed play a role. Working with a registered dietitian who specializes in IC and vulvodynia might help you identify triggers and create a diet plan that minimizes irritation.
5. **Medication Review:** Discuss with your healthcare provider if your current medications might be contributing to the pain. Sometimes, adjustments or changes in medications can make a difference.
6. **Ongoing Communication with Healthcare Team:** Make sure you're in regular communication with your healthcare team. Regular follow-ups can help ensure that your treatment plan is adjusted as needed.
Remember, these are general suggestions, and what works can vary from person to person. Always consult with your healthcare team for personalized advice based on your specific medical history and condition. ~ Vibrant Support
Stay low oxalate.
I was diagnosed with this about 2 years ago and some new symptoms I have been experiencing besides the burning and fire pain with urination is burning in my feet legs arms and hands. This feeling runs through out my whole body and it feels like when you stand on cement on a hot day and just stand there for a while and it begins to burn your feet. I have another feeling of pain in my feet but I can not find the word to describe it. When I told my doctor about this they told me that they never heard that happen with other patients. The pain that runs through my feet and hands etc worsens after I urinate….
ALTERNATIVE HERBAL TREATMENT CURED ME FROM CYSTITIS UTI AND FIBROMYALGIA, I TOOK THE MEDICATION FOR 21 DAYS🙏🏻🙏🏻 I WILL FOREVER BE GRATEFUL TO DOCTOR ISIBOR
u look like you took fluoroquinolones antibiotics like cipro
I also have same symptoms and doctors say the same
B Vitamins. Particularly thiamine
@@Sneh280 omg really has anything changed for you have you tried anything new to help with the pain ?
Think lyme disease or co infections when you have IC, it's usually accompanied by all the symptoms of Lyme. Fibromyalgia, muscle cramps, migraines, gut dysbiosis etc.. I have IC and Lyme.
Thank you for sharing about these co-existing symptoms. ~ Vibrant Support
One thing I noticed for "me' is that when I started taking thyroid meds (NDT), my bladder issues went away (IC and then frequency - which started years ago before developing IC). Every time I stop the thyroid meds IC flares up. Just sharing my experience. 🙂
Thank you for sharing!!
Thank you! This is affirming that I need to have my doctor check my thyroid again
In the starting you did not have bladder pain?? Only frequency then it developed in IC bladder???
Not me. I wish.
The link for "How to Find a Pelvic Physical Therapist:" doesn't work any more. Do you have any updated link or some other similar resource? My pelvic floor is too tight and the PTs mostly work with loose pelvic muscles.
ALTERNATIVE HERBAL TREATMENT CURED ME FROM CYSTITIS UTI AND FIBROMYALGIA, I TOOK THE MEDICATION FOR 21 DAYS🙏🏻🙏🏻 I WILL FOREVER BE GRATEFUL TO DOCTOR ISIBOR
Hi. My story emerged after I started receiving vaginismus treatment. Urologists told me that I may have damaged the entrance to my urethra due to the dilators. This made me very sad. Is something like this possible? My husband and I were absolutely devastated. Then an endless cycle began. I started urinating almost every minute. I constantly have urge to urinate. This feeling sucks. In addition, during the cystoscopy, wounds on my bladder and a prostate-like piece of flesh blocking my urinary tract were also found. I'm incredibly confused. I couldn't do the exercises I needed to do after my vaginismus treatment. My gynecologist insistently says that my urologist is exaggerating and that this will not lead to this situation.
What I want to ask is, could our vaginismus treatment really cause this? THIS MAKES ME FEEL GUILTY.
I'm so sorry you're going through such a challenging and confusing situation. It's unlikely that dilator use for vaginismus treatment would cause urethral damage, but conflicting medical opinions can be incredibly frustrating. Your feelings are valid, but please don't blame yourself. Consider seeking a second opinion from a urogynecologist who can address both your pelvic floor and urinary concerns holistically. Remember, you're doing your best to take care of yourself, and that's something to be proud of. Sending you strength and healing vibes! ~ Vibrant Support
This is the biggest issue I see with the scientific community where they are focused on the wrong diagnosis. This is often the result of their thesis that they are so focused on proving right as part of their research that they've secured funding for.
When you go to the clinic, they look at your demographics. Say, a person of 22 is experiencing cardiac arrest symptoms so they go to the ER. There, they get told everything is fine and the doctors refuse to do a thorough test of the patient because their insurance won't cover it. The patient dies of some sort of heart failure and it quickly gets forgotten about. No lesson is learned in the process.
This is why I'm a strong believer of looking at the genetic history of each person as well as their life style and occupation. We have to look at where they come from. People who have more stress in their lives tend to age faster and have more health issues. Good clinics do this.
We have to be looking at all possible outcomes and answers to a problem. Most do not.
Excellent work!
I’m so over having this, I’m sick and tired of this pain 😢 I’d rather not exist then to live more days with this! It’s so awful 😢
I am so sorry to hear that. I want you to know that healing is possible. I recommend visiting a local pelvic PT for one-on-one support. In the meantime, feel free to check my Overcome Pelvic Pain program. You can grab the first week for free bit.ly/overcomewomenfree
please hang in there that is the whole point of this video
0:04 selam 7 yıldır IC yim videomuzu bende anlayabilmek isterdim çeviri dilinde Türkçe olmadığı icin bu imkânsiz çok üzgünüm
I'm sorry you can't understand the video without Turkish subtitles. It's frustrating when language barriers limit access to helpful information, especially for a condition you've dealt with for so long. Keep looking for IC resources in Turkish - there might be some local support groups or translated materials out there. Wishing you all the best in managing your condition! ~ Vibrant Support
What about uribel? Can you share info on this?
If you have been prescribed Uribel or have questions about its usage, it's best to consult with your prescribing healthcare provider or pharmacist. They can provide you with detailed information specific to your situation and address any concerns you may have.
Is the physical therapy for OAB (including kegel) helpful for bladder/pelvic pain or make it worse? Thanks
Often times people with bladder and pelvic pain need to STOP doing kegels, and focus on releasing/relaxing the muscles instead. Talk to your physical therapist, and check out this video: th-cam.com/video/y2WQqgceYzM/w-d-xo.html
i dont know my condition but i don't have pain... it doesn hurt it's just overall inflammation and frecuency, ive had analysis done, no infections, no problems in my ovaries or uterus, a normal looking bladder through x-rays... i took medication but made me even more inflammed preventing me from peeing but not from feeling like i need to go, other medications cease the inflammation but make me dizzy and make my nose obstructed, they also dont stop frequency... the more inflammation the more frequency i experiment... I can evade it if i don't drink water but... i got to drink it, it's necessary, i also noted how it's only water that triggers the frequency due to how fast it's processed through the body... so my only 2 issues is inflammation and frequency, i've been like this since february... will it get worst? can i get cured?
also having period cramps or being constipated prevent me from having frequency but... cramps and constipation don't feel good
I have what my doctor called bladder cramps…is it possible to not have frequency issues and still have the severe pain…I do go pee a lot…but I don’t see a correlation when having the pain and having to pee…I just pee a lot.
We recommend seeing a pelvic floor PT, if possible. Pain can have several causes (e.g. pelvic tension..). You might benefit from tension release workouts. ~Vibrant Support
Does this cause vaginal burning ? Or no
how to avail that book? i need it
DMSO!! Try it!
Can it still be IC if i have only urgency to pee and was diagnosed with trigonitis with no infection,tried a lot of things nothing helped im 18 years old
Only your healthcare provider can make that determination. ~Vibrant Support
I'm sorry I don't believe some of this. I have the actual lesions . I think IC is an issue and the pelvic floor dysfunction is an issue. Some do have physical proof of sores.
Yes I have physical sores. But you can lesions, u can have lots of pressure and no lesions or sore. But I do have the pics from my scope. I think they are different sub types honestly.
It's thyroid ! Always had bladder infections . Now I have no infection ,pain spasms whole 9 yards. I noticed since 2017 my TSH has been going way down. One lady commented a pinch of salt in water helps? I noticed no pain after I ate a bunch of salty cheese puffs.
Oh no! I am sorry to hear about that. Nutrition plays a major role in our physical and even mental health!
My husband has a traumatic brain injury and it's wheelchair bound. I cannot get his urologist to understand my husband's pain. Bladder Botox did not fix it, as they thought it would. They just keep saying it's neurogenic bladder. Sometimes Motrin helps, sometimes not. I would love to speak to this woman.
I'm so sorry to hear! Wishing the best in finding answers!!!
I absolutely have both symptoms. I drank near 2 cups of water at 1am once a bathroom was finally available, & then passed out right after instead of going, woke up at 12:30pm & when I went I had no relief afterwards! And could tell something was severely wrong now :/
Yes it's been 10 days but I have a 1 in 100 million+ case of not being able to sit or stand very long so I know when things can be likely to never go away.
how are u now G
@@adonisbleach4212 I just want thru what no other known person has..
@@adonisbleach4212 i diagnosed that before anyone else to save time, the cause was bad ppl enjoying getting away with breaking law & harm.
Hi how are you feeling know
Elmiron made my hair fall out..I told the doc and he ignored me..
I am so sorry to hear this!!
Uptick did you feel any relief after taking elmiron??
@@kusmarai7540 my ic was cured with a procedure done by a urologist/gynecologist whereby they broke the irritated bladder wall
And put in medicine I don’t know what it is called.. then I did a diet with alkaline foods plus organic foods and still do it today..
How bad is your ic? having my hair fall out and having ic was so depressing I told the urologist and he did not believe me this
Was way before I had the above procedure done I described..
@@uptick888 did you feel better after surgery??
@@uptick888 urologist did the cystoscope today for me but they don’t find anything ic is diagnosed by cystoscopy?? Coz I’m really hurting so bad but Doctor don’t give anything
Somebody tried bladder instillations with hyaluronic acid ?
Yesterday was the 4th time, once a week using Instylan. Frequency urinate has improved a lot, bladder pain reduces from scale 4 to 1-2, unfortunately the pain continues daily. I am a male 55 years suffering and diagnosed with IC 2 years ago
@@calsonyap8337 is nice to Hear some improvement, I hope keeps working , I received 10 , now there’s no pain but some days there’s frequency but just like 6-8 times per day and next day everything back to normal
I was never the same after a hemroids surgery in 86
Omg I have way more than 4-5 food triggers. All the classic ic diet no no foods cause so much pain. But those are also high histamine foods. Acidic and hot foods are mostly high histamine .
ALTERNATIVE HERBAL TREATMENT CURED ME FROM CYSTITIS UTI AND FIBROMYALGIA, I TOOK THE MEDICATION FOR 21 DAYS🙏🏻🙏🏻 I WILL FOREVER BE GRATEFUL TO DOCTOR ISIBOR
Thank you 😊
Hello? Where are sensible doctors like this? Why do doctors insist on not listening and not trying new stuff? I don’t understand.
I got IC in 2018 and I took a holistic approach where I focused on getting my whole body healthy as well as I did Oxygen bladder therapy, lots of supplements and vitamins, minerals, amino acids and probiotics etc... After 4 months of excruciating pain it went away completely, In total remission. It stayed gone for 5 years and then I got a UTI and now I'm battling it again.
Hello Kaylene
I know I'm a total stranger, but I'm gonna try to tell you anyway. I wish I could reach everyone!
Was diagnosed with IC 16yrs ago, because I had classic smptms of infection - a painful persistent intense urge to pee, but -ve dipstick and culture.
There is no scientific evidence to link these common symptoms to anything but UTI. Unfortunately, 90% of MDs still trust the unreliable tests to rule out infection. So the IC Myth was invented to explain things. And a significant number of UTIs continue to remain undetected. If there's no detectable abnormality viz. obstruction, cancer etc., you have a chronic UTI that has become embedded. It will keep showing up, even off and on, until you take appropriate antibiotics. The longer you leave it untreated, the longer it will take to clear. This IC diagnosis is an indication of disgraceful medical incompetence and negligence. And it's generating tons of business for PTs, Urologists and of course Big Pharma.
Watch and follow Live UTI Free. They have a website and a TH-cam Channel.
You can also read Cystitis Unmasked by James Malone-Lee, a genius LUT Clinician, who conducted a stack of research.
All the best! 🤍
😒 you will recover again, this is just a temporary setback ❤
BTW, Diet does not seem to affect my IC at all.
Would love to consult you please
Hey could I please ask you for details?
Nice overview but didn't get much to take away from this content beyond keeping a food log and seeing what your triggers are. for me, the #1 trigger turned out to be lactose-containing items like milk (even the "lactose-free" versions) and milk chocolate. weird it didn't start until my mid-50's. what's up with that?!? add it to the pile of things u have to change as u age i suppose.
Does anyone have any squeezing type symptoms of your bladder(low center abdomen) area when you get flare ups? I had those that came abs went during this past couple weeks dealing with these new symptoms. And I have had bladder spasms off and on lately also. I take cantharis and I have OAB as well. That helps the OAB. Since this so called flare up though, the cantharis didn’t seem to help as much as it did and I got that sweeping feeling. Then I don’t sleep well because I lay on my one side I have urge to Pee. I lay on my other side I have to pee and I get kinda that uncomfortableness. Not too much pain anymore but that like it can’t relax and I can’t sleep well. I sleep better on my sides and it’s like harder to with this. It’s sucks. 🤔
Omg I’m trying to fall asleep right now and I’m a side sleeper too! It makes it so hard.
@@Garlicbredqueen I’m trying to do stretches/exercises and have done some before bed to help. I’m still not 100 percent I have IC but helps with bladder issues as a whole. Check out Dr. bri on you tube. She has good stuff.
I hope to at least get diagnosed in what and what I don’t have soon. Take care. 😊🥰
Has anyone tried QHHT alkaline diet has helped me the most..... 8 years tried everything..... So only a strick alkaline diet works for me.... Going for QHHT hipnoses shortly.... Has anyone tried it?....
hi. is urgency always present. I have terrible pain but no urgency. could it still be IC?
Could also possibly be endometriosis. They go hand in hand. ( I have both) its absolutely horrible. Good luck i hope you find an answer.
@@christiem0716 I had also endometriosis any my doctor told me I don’t have any endometriosis now coz she did last sep 30 in surgery and she said there is no any endometriosis but I’m really very bad pain on bladder and I give urine culture everything show always negative reports is this ic pain or endometriosis??
@@kusmarai7540 From what my Dr told me ( she is an endometriosis specialist) she said endometriosis always grows back since there is no cure and that IC and endo pretty much go hand in hand. But even if you don't have endometriosis it still can be IC which is really just unexplained bladder pain. But I would get a second opinion if I were you or see a different Dr -maybe a specialist if you can. I know for me, too much citrus fruits, cranberry, coffee or spicy food makes IC worse. I also take turmeric and take a probiotic and those seem to help the pain a little with both problems. I'm not a Dr but I have done a lot of research on my conditions. I hope this helps you and you can find some relief. Good luck! ❤
I have a feeling that my bellybutton and lower is on fire and painful…I don’t need to pee during these episodes any more than usual. I don’t have one…no incontinence. Doc says it bladder cramps and I have had the question…can you have bladder cramps without urgency.
Did you find out?
Not just pelvic!
Gut, respiratory, skin also.
This condition has carved a big piece out of my life.
Numerous urinary tract and sinus infections, gut pain, wheezing, bladder pain, headache behind my eyes, hoarse voice precipitated by coffee, tea, various foods and smells.
Do you have igg or ige allergies? Thank you
I think food is definitely a trigger for my IC. 😊
It’s good to know your triggers! It is helpful for managing your symptoms and preventing flare ups
Is it normal to have blood in your urine with IC?
Please talk to your healthcare provider about this.