Don't know if I had IC but had a sore bladder for 8 years, had antibiotics etc and lived with the pain. My dentist (of all people), unprompted told me he had lived with a sore bladder until he stopped drinking milk and drank milk alternatives like oatmilk, soya milk etc. I followed his advice and noticed a good difference in 3 days and after 9 months I feel like a new man. I would say I'm 95% better. The odd twinge probably because of milk in various items you eat like bread I guess. Maybe this might help you-just try it for a week and see if there is any difference.
@@roxannemua9350 I was diagnosed with Interstitial cystitis in 2018 and I have tried everything I could to heal myself, but it was all to no avail, until I saw a post on a health forum this herbalist through his email and he prepared me a herbal cure for Interstitial cystitis and sent it to me via the delivery service of UPS from the company, when I received this herbal cure. They gave me step by step instructions on how to apply it, when I applied it according to the instructions I was totally cured of this disease within 5 months of use, I am now Interstitial cystitis free, all thanks to Dr. Timothy You can also contact this great herbalist for help by email: timothydouglas3612@gmail.com or contact Dr. Timothy through his whatsapp number: +1(239) 977-4390 He is also specialize in treating all kinds of diseases, VIRUS HERPES , HEPATITIS B, CANCER, BRAIN DISEASE, INFERTILITY, DIABETES EPILEPSY AND MORE ...... He will also be of help to you
If it’s so serious, why won’t my doctor talk about it after my diagnosis? I’m treated like I have a simple nosebleed. This stuff really changed my life!
Please, get a different doctor! I’ve had this for decades. I have a morphine pump, breakthrough meds, have had some of my bladder nerves surgically severed, and have tried so many surgeries and procedures. You just get a doctor that understands IC. I use a pain management doctor.
These ideas are not necessarily scientifically proven but these are some of my own beliefs about what can possibly help internal health problems 🙏 : 1- regular use of edible cannabis oil or similiar cannabis products 2- try only drinking water, no: tea / coffee, milk, juice, alcohol 3- don't eat sugars, red meats, dairy products, spicy foods, alcohol, caffeine, yeasts, deep fried or processed / canned foods. Or at least try to limit / avoid these foods as much as possible. 4- wim hof method : breath work and cold showers regularly 5- healthy regular exercise routine : such as yoga practice - qi gong - tai chi - work outs - walking 6- meditation : have a regular meditation practice 7- journalling : write your feelings in a journal regularly to help release stress and anxiety 8- good sleep habits 9- try to stay hopeful and keep a positive mindset. Find hope and inspiration from different sources such as self help books, spirituality, etc..
I wouldn't wish my IC on anyone, even my worst enemy. It sucks royally!!!! So much you can't eat or drink or even just do. Road trips are hell. And with physicians worried about opiates, no doctor wants to really do much to help his or her patients without fearing the Feds breathing down their neck. I've had it my whole life. It's like peeing razor blades with each urination. You can't drink coffee, soda, or any acidic or carbonated beverages without putting yourself in the hospital. Not to mention you pee 20 to 50 times a day. It's a good day if I go 15 to 20 times in a given day. That is from extreme dietary changes to avoid such substances, but stress is very hard to controlled.
I'm 65 yr old male. I've had hematuria since 2011. Mar, 2015 a urologist said I might have carcinoma insitu during a cystoscopy. The removed tumor was benign & the path report stated severely inflamed bladder with asymmetrical bladder wall thickening. My pelvic/penile pain is so great that I'm practically disabled. I've not found a remedy for IC/BPS (yes, the named was changed from PBS). I know this for a fact: I would not wish IC/BPS on my worst enemy. This mdconversation video is by far the clearest definition of IC/BPS I've seen; I'm surprised it has no more than 25K views. IMHO the number of folks with IC/BPS is so small and because it's so difficult to diagnose, there's not a pressing need to find a cure. But I'm hanging in there; even hoping for a miracle!
Carl Olson Have you heard of DMSO treatment? I read somewhere that the FDA approved it for the treatment of interstitial cystitis and it's a natural solvent that can reduce scar tissue and even dissolved it and helps with inflammation, I've been suffering from chronic prostatitis and bladder pain I've been looking into DMSO and iodine, but I'm not sure if there's Dr's that do this treatment. Hope you find a treatment to heal yourself and wish you well, hang in there. Try a Internet search for DMSO, it's interesting stuff.
Very interesting. I'm 20 and have ic, which is annoying being a guy because all the urologists that I saw we're really skeptical of the diagnosis of ic. Thanks for the information though, I really appreciate it. Good luck to all my fellow icers out there.
@@johnhenry6797 Get a different doctor women urologist are better than the male doctors I was had seen 5 male doctors and one had the nerve to tell me to stop complaining too much like a child. Next day I reported him and started seeing a female instead.. I'm not cured, just no more insulting me..
i'm so sorry. i hope you are better now. Prayers, begging for healing....., I can't believe this can happen and go on for indefinite.. It hurts so bad. At least with cancer or terminal illness...you can plan on healing or being relieved of the torture via passing.
Wow...itas crazy and kinda nice to Finley have a name to what I have been suffering from for 17 years!!! I have so much other things going on we finely figured this part out!!!! Insane!!!!!
I had the same problem and I learned how to control the terribles symptoms of this condition: I take 1 or 2 grams of aminoacid L-ARGENINE on an empty stomack , It is cheap and you can get it in any drugstore. Please try it.
Hi there, I hope your symptoms have gotten better and you are living a full life and enjoying being pain free. If not, I can offer a few pieces of advice having gone through this hell. While I have not been officially diagnosed and my urologist dismissed me entirely, I suspect I have this condition. I felt pressure/urgency in my bladder that reached a peak about three days ago that had me begging for mercy and considering some "alternatives" so I completely understand pain, also have had kidney stones and cavities before so I am well acquainted to extreme mind bending pain. What helped me was, bare bones diet. Eliminate everything and eat no inflammatory/irritating foods such as rice and oats, I also reduced my water intake slightly (fuller bladder made it hurt more) create an environment for your bladder that is conducive to healing, remove triggers essentially. Try 1/4 teaspoon baking soda (it's like .50 cents for a small box) and 1/2 cup water, take a big dose of ibuprofen to reduce inflammation as well. All these together worked for me and my pain completely stopped. My heart and soul goes out to those suffering with this bullshit, it's inhumane and cruel beyond words. Stay hopeful, it will get better. if you need to eat rice and chicken for the rest of your life, by all means do what you have to in order to never have a flare up again! also avoid unprotected sex, I think that is what provoked mine as I may have had a compromised bladder wall and foreign bacteria got in through my urethra and finally did it in. Be kind to your bladder, treat it like its a fragile glass statue and watch how you sit and move as to not hurt it. Best wishes and I hope every last one of you suffering find relief and peace because I completely relate to what you are feeling
THANKS FOR THIS. INFO. I HAVE. HAD SINCE 2005. SEVERAL. SURGERY. AND HERNIA SURG AND. NOW IN KIDNEY STAGE 2. AND LIVER DAMAGE. I HOPE. THEY GET TO BOTTOM. OF THIS.
What seems like interstitial cystitis can be oxalate toxicity, especially if you took a lot of antibiotics. Antibiotics don’t just kill off bad bacteria, they also kill off the good bacteria that break down plant oxalates. That can result in the formation of sharp microscopic oxalate crystals that get deposited in tissues and cause pain. The pain can feel urinary, vaginal or both. Also, some people get oxalate toxicity without it being triggered by taking antibiotics. It’s worth looking into a low-oxalate diet.
Raw garlic helps when my symptoms return. I take one or two cloves and chop it up into small bits that are easy to swallow. I tried using a garlic press but it smashed it up and it became too intense to swallow. It would instantly make me feel nauseous. So I went back to chopping it by hand. I put it in a shot glass, fill it with water and then take the shot. My symptoms usually go away within 30 minutes to an hour. Idk why it works but it does. 🤷♀️ Putting a heating pad or something similar on my lower abdomen helps as well. Feel better y’all! 💜
Don't know if I had IC but had a sore bladder for 8 years, had antibiotics etc and lived with the pain. My dentist (of all people), unprompted told me he had lived with a sore bladder until he stopped drinking milk and drank milk alternatives like oatmilk, soya milk etc. I followed his advice and noticed a good difference in 3 days and after 9 months I feel like a new man. I would say I'm 95% better. The odd twinge probably because of milk in various items one may eat because of milk in them. Also I stay away from cheese, yoghurt etc (dairy products). Don't know if this might help anyone with IC but why not try it for say a week and see if there is a difference-you have nothing to lose.
I was very confused of my ic...but after watching this i get to know that which type of ic iam having...thanks for the video..its a detailed one..infact i searched alot about it but no result was found....
I take Elmiron and an antihistamine. It is well controlled now, unless I eat fried foods with ketchup, eggplant, hot sauce, alcohol, Dunkin Donuts Coffee, and more.
@@laurafeher9694 Wow I didn't know that! Is the food grade taken orally? Do you have suggestion for a good quality brand of the ones available on Amazon? I've only heard of DMSO instilled into the bladder for IC, so your comment caught my eye.
@@pagemastrogiovanni9195 No caffeine or decaffeinated sodas either it will cause inflammation. I can't eat nothing acidic not even yogurt. nothing with nitrate, tomatoes 🍅and all the fruits that has acid 🍇 grapefruit, cranberry juice, apple 🍎 juice, mangoes...... And I'm from Cape Verdi Island we have lots of fruit trees and can't enjoy them..😢
Thank you for sharing this with us on here. I found it very interesting and I am sure it will be helpful.As I suffer a lot with bladder infections and trouble.A lot of pain and burning sensation.
I feel sad and upset that my job triggered me to have this problem. I’ve gotten uti before but this time got hard for me to go to the restroom because my job wasn’t allowing me to. Now I am dealing with this issue for the rest of my life sad to say.
I started getting the pain in my pelvis in 2012 i finally got told in 2014 this is what i had and i had it bad it cant b cured at all :( i am only 25 years old and this has messed my life up so much its depressing :( i am in agony nearly very day with it on constant high pain relife yet still always hurting me this vidoe helped my understand more about my illness so thank you just wish there was a cure for this illness as its messed me and my life up :( so sad
Hi Lisa, I find relieve drinking 2l water a day and in case of pain I add sodium bicarbonate or potassium citrate (which is the main component of cystopurin medication) or lemon. All of them alkalines your urine (you can check the ph level buyng ph strips from a pharmacy)
Please stay strong..I drink@least 40ounces of water/day&avoid sodas,sugars,&acids..no more pizzas...eating steamed greens/carrots;jasmine rice miso soup..eat clean & your bladder will settle down I also take 10mg of Elavil to relax my bladder*taken@🌙 night...still have to per every 1.5 hours...I accept this...pain diminishes you can do this
I have just been diagnosed with this condition and I am considering suicide. I cannot imagine living my life with this condition. This is too much. I’m on opiates and they are starting to not work. Trying to work every day and just breathe through it but I can’t. This pain is like a thousand fires are constantly burning inside me. And I just can’t live life this way. It is not living.
I understand darling I feel the same. My world is constant pain with my bladder and all over due to fibromyalgia 😢 Don’t give up Darling we will find a way to help xxx
Please don't do anything drastic 🙏. I'm here too because of the symptoms. Peeing daggers is literally the worst feeling I've ever felt. But losing someone close is somehow worse. Hang in there, your not alone.
I am in the same boat. I can’t get a good night sleep. The pain goes to my back mostly and it goes to all over my upper body. I am considering long fasting but I haven’t had the willpower yet. Fasting helps to heal our body on itself. Consider that and you will do it eventually. Don’t give up❤️🙏
@@AmSuperBlessed oh my goodness I will look into this. Most days I’m in pain I don’t want to eat so this won’t be too hard for me. How long do I need to fast.
The cultures in our nations are not capable of picking up the bacterial infections. Seek more In depths urine testing. Such as molecular, DNA, found at PathOGenius Labs in TX.
I put IC in remission for an entire year with eating proper bland foods and just water and moderate exercise and using stretches if i would feel it coming on. I was at the point where i could even get away with eating some of the foods that cause irritation and felt like i had finally cleared the hurdle. I then out of nowhere got a UTI and rushed to treat it asap to avoid a reoccurrence of symptoms but it was too late, and all the symptoms came back with a vengeance. Time to reset the clock back to 0 and try to overcome it again. I am self-diagnosed also lol.
Yup that is what did me in, didn't catch a UTI but did get this extreme pain after having sex and was cleared multiple times of any bacteria or STD's thankfully. I think some bacteria did get in through the urethra and did some damage and my body did clear it up and all the water I drank flushed it out but the microbes still probably did damage to my bladder lining and compromised it, then substances in urine irritated it and caused it to flare up, after staying away from inflammatory/irritating foods i.e. spices, sauces, carbonated drinks, citrus etc I am pain free as of last night, and I never thought it'd get better but here I am, a functioning normal every day person once more. the whole time I was going through it I was like "I just want my old problems back" lol so my recommendation to others is stay away from bladder inflaming foods, take lots of ibuprofen and 1/4 teaspoon of baking soda in 1/2 cup water and let your bladder lining heal until you introduce other foods back in. Also don't be an idiot like me and have unprotected sex, I think microbes still get in and do damage despite not being a full blown infection warranting antibiotics, plus communicable diseases are a thing so wear protection obviously even though it's not as pleasurable. I was lucky that I didn't catch anything and relied solely on the person word they were clean and that's very foolish, sex is too risky lol
Cindy Luhu That's so scary! I already have Fibromyalgia, Hashimotos & Coeliac which all up my chances of Lupas, now I'm pretty sure I have IC. I'm also losing hair for unknown reasons even though my Dr insists I don't have Lupas (at this point). I'm so scared of developing it!
L Burns Mine ending up not being IC. (I think). I went to my Urologist and he performed a few bladder instillations and went in and stretched my urethra. I haven't had problems since then. He said I had a lot of scar tissue in my urethar when he got in there. I still believe I have some autoimmune stuff going on that hasn't been diagnosed. I am going to have to see a specialist at one point in time. Have you had the instillations? My Urologist said sometimes it will rebuild the lining of the bladder because it has Heparin in it. I went thru 6 months of hell. But like I said, the instillations (I had 2) and the urethral stretching worked for me. Bless your heart, I know how it feels and it is scary. Some people have it so bad that they can't function. Keep me posted!
I also had all the symptoms of UTIs but my cultures were always negative. Symptoms so bad with pus, blood, you name it but negative cultures. That is why my Urologist thought it was coming from my urethra and not my bladder and etc. I always had aseptic, clean urine in my bladder. That ruled the bladder out. Since I was having burning, tingling, constant pressure, urethral spasms he thought it was my urethra.
Cindy Luhu Thanks for responding, you're too sweet! Really interesting information you've given me here, something to definitely consider for myself. I haven't had instillations at all, I've only recently started to really look into all of this. I'm glad to hear that worked for you, relief from chronic pain like that must be amazing! Thanks again, I am at least for hopeful for the moment 😊
i added my story in here as a reply to someone so you may have to scroll and find it. i am not sure if you all are aware of this but this video is missing 1 piece of possibly true information that i have come across after doing extensive research regarding this condition/disease. this condition has been linked to fibromyalgia and it has been linked to IBS (irritable bowel syndrome). i also have questions for all the commenters on this video. do you all get really bad aches in your hip joints? do you have water retention/edema in the legs? do any of you get nausea and the occasional vomiting spells?
Thank you a lynn....I suffer terribly with this disease and will also add that it is linked to lymes disease, migraine headaches and constipation. I also deal with a tremendous amount of swelling. I am dealing with an 8 week flare with only 4 days of relief in between right now. I cannot wear pants or jeans at all and I am not a skirt girl at all but that is my only option now. I feel for all of you suffering with this awful monster within us. Diet and stress are my main factors that affect me, plus I am lactose, so I am basically on a very limited diet ....I pray everyday a cure will be found because this is very depressing and painful to say the least!!!
yes!!!!! I have very bad swelling in both legs from my knees to the tips of my toes and doctors can't figure out what's causing it. I also have horrid aches and pains in my hips that run down my legs sometimes and I call them " hip flare ups " and sometimes they hurt so bad in my hips I can't sit down at all!!!!!
a lynn interesting. I'll have to read your story.. I've just started researching IC and I'm pretty sure I have it. Interestingly I also have Fibromyalgia & IBS (as well as Hashimoto's & looking at Coeliac possibly). I get really bad aches in my hip joints (and everywhere else!!) and I definitely have water retention!
I have had mine for 15 years. Interestingly no one diagnosed for years. Even the urologist didn’t give me good insight. And now being in healthcare myself I have figured it out but I don’t know what to do to fix it
Can someone here please message me as I have been tested for everything had seen urinology and still nothing I think I have this !!!!i get excruciating stinging and burning
Wow. I have a catheter and I'm experiencing bladder spasms and it's very painful ! I always heard that drinking pure cranberry juice but lately it has worsened
I've had this for thirty years and really wrecked my life. It's gotten less painful since menopause but not a day goes by I don't have some issue whether it's pain, spasms, urges to pee, etc. In the entire time I've had this the treatment(s) haven't progressed at all. I was lucky to have a urologist who was an expert in the condition but he retired and I've been to three different urologists-none of whom treat any patients with IC and I'm not going to teach them how to treat this.
30 years 😔 l can’t fathom that! I’m 17 years and at my most frustrated. Coming on and researching this to find so many suffering makes me sad ! I have a lot of knowledge now and feel the same about informing my 5 urologist.😂
CAC Sheet Dhara Syrup is pure herbo mineral ayurvedic formulation which works on doshas of the body especially pitta doshas. It mainly consists of herbs like Ajwaion, Kapur (camphor) and Mint leaves that provide a cooling effect and helps to reduce burning sensation during micturition. it also controls mood swings, bloating and nausea.
I was diagnosed with Interstitial cystitis in 2018 and I have tried everything I could to heal myself, but it was all to no avail, until I saw a post on a health forum this herbalist through his email and he prepared me a herbal cure for Interstitial cystitis and sent it to me via the delivery service of UPS from the company, when I received this herbal cure. They gave me step by step instructions on how to apply it, when I applied it according to the instructions I was totally cured of this disease within 5 months of use, I am now Interstitial cystitis free, all thanks to Dr. Timothy You can also contact this great herbalist for help by email: timothydouglas3612@gmail.com or contact Dr. Timothy through his whatsapp number: +1(239) 977-4390 He is also specialize in treating all kinds of diseases, VIRUS HERPES , HEPATITIS B, CANCER, BRAIN DISEASE, INFERTILITY, DIABETES EPILEPSY AND MORE ...... He will also be of help to you
MzClementine I think so although there seems to be no literature acknowledging comorbidity. I’ve had IC since 1999 at age 15. I’m finally seeing a geneticist for hEDS. My mother has the diagnosis, and I can already see I meet the criteria. I’ll be asking the doctor about a link between IC and EDS.
I was diagnosed with Interstitial cystitis in 2018 and I have tried everything I could to heal myself, but it was all to no avail, until I saw a post on a health forum this herbalist through his email and he prepared me a herbal cure for Interstitial cystitis and sent it to me via the delivery service of UPS from the company, when I received this herbal cure. They gave me step by step instructions on how to apply it, when I applied it according to the instructions I was totally cured of this disease within 5 months of use, I am now Interstitial cystitis free, all thanks to Dr. Timothy You can also contact this great herbalist for help by email: timothydouglas3612@gmail.com or contact Dr. Timothy through his whatsapp number: +1(239) 977-4390 He is also specialize in treating all kinds of diseases, VIRUS HERPES , HEPATITIS B, CANCER, BRAIN DISEASE, INFERTILITY, DIABETES EPILEPSY AND MORE ...... He will also be of help to you
आपने बहुत अच्छी जानकारी साझा की है। मैं भी इस समस्या से गुज़रा हूँ। मुझे उस समय बहुत बुरा लगा। मैं कई क्लीनिकों में गया, लेकिन परिणाम के कारण मैं हिम्मत हार रहा था। तब किसी ने उन्हें Planet Ayurveda के बारे में बताया, वे वहां गए और उपचार किया। अब वह ठीक हैं। तो, अगर किसी को इस तरह की समस्या या किसी अन्य स्वास्थ्य संबंधी समस्या का सामना करना पड़ रहा है। आपको Planet Ayurveda जाना चाहिए।
I was diagnosed with Interstitial cystitis in 2018 and I have tried everything I could to heal myself, but it was all to no avail, until I saw a post on a health forum this herbalist through his email and he prepared me a herbal cure for Interstitial cystitis and sent it to me via the delivery service of UPS from the company, when I received this herbal cure. They gave me step by step instructions on how to apply it, when I applied it according to the instructions I was totally cured of this disease within 5 months of use, I am now Interstitial cystitis free, all thanks to Dr. Timothy You can also contact this great herbalist for help by email: timothydouglas3612@gmail.com or contact Dr. Timothy through his whatsapp number: +1(239) 977-4390 He is also specialize in treating all kinds of diseases, VIRUS HERPES , HEPATITIS B, CANCER, BRAIN DISEASE, INFERTILITY, DIABETES EPILEPSY AND MORE ...... He will also be of help to you
Wow, You shared very good information. My Aunt had suffered from this problem. She was total upset during this. She went to many Hospitals But the result was not good. Then, Someone told him about planet Ayurveda. she went to Planet Ayurveda & got his treatment started. Now she is fine. If you have this type of problem or any other type of health problem. you should go to Planet Ayurveda.
I have it right now and feel like bawling my eyes out in a dark corner.
Don't know if I had IC but had a sore bladder for 8 years, had antibiotics etc and lived with the pain. My dentist (of all people), unprompted told me he had lived with a sore bladder until he stopped drinking milk and drank milk alternatives like oatmilk, soya milk etc. I followed his advice and noticed a good difference in 3 days and after 9 months I feel like a new man. I would say I'm 95% better. The odd twinge probably because of milk in various items you eat like bread I guess. Maybe this might help you-just try it for a week and see if there is any difference.
Your not alone i have it to
Me too
@@roxannemua9350 I was diagnosed with Interstitial cystitis in 2018 and I have tried everything I could to heal myself, but it was all to no avail, until I saw a post on a health forum this herbalist through his email and he prepared me a herbal cure for Interstitial cystitis and sent it to me via the delivery service of UPS from the company, when I received this herbal cure. They gave me step by step instructions on how to apply it, when I applied it according to the instructions I was totally cured of this disease within 5 months of use, I am now Interstitial cystitis free, all thanks to Dr. Timothy You can also contact this great herbalist for help by email: timothydouglas3612@gmail.com or contact Dr. Timothy through his whatsapp number: +1(239) 977-4390 He is also specialize in treating all kinds of diseases, VIRUS HERPES , HEPATITIS B, CANCER, BRAIN DISEASE, INFERTILITY, DIABETES EPILEPSY AND MORE ...... He will also be of help to you
@@michealcollins5650 lm from Australia and would like to know more .Are you still IC free? This doctor sounds like a life saver 😊
If it’s so serious, why won’t my doctor talk about it after my diagnosis? I’m treated like I have a simple nosebleed. This stuff really changed my life!
Please, get a different doctor! I’ve had this for decades. I have a morphine pump, breakthrough meds, have had some of my bladder nerves surgically severed, and have tried so many surgeries and procedures. You just get a doctor that understands IC. I use a pain management doctor.
@@rhondamadgirl Dr Harvey cured me from IC, Contact Dr Harvey for the cure via (drharveyphytotherapy@yahoo.com) Whatsapp: +1 (971) 666-3103
Because Doctors are worthless.
Exactly! My daughter tried to kill herself yesterday. No one listens
@rhondamadgirl
Exactly
I went through 3 doctors before I got the right kind of service.
These ideas are not necessarily scientifically proven but these are some of my own beliefs about what can possibly help internal health problems 🙏 :
1- regular use of edible cannabis oil or similiar cannabis products
2- try only drinking water, no: tea / coffee, milk, juice, alcohol
3- don't eat sugars, red meats, dairy products, spicy foods, alcohol, caffeine, yeasts, deep fried or processed / canned foods. Or at least try to limit / avoid these foods as much as possible.
4- wim hof method : breath work and cold showers regularly
5- healthy regular exercise routine : such as yoga practice - qi gong - tai chi - work outs - walking
6- meditation : have a regular meditation practice
7- journalling : write your feelings in a journal regularly to help release stress and anxiety
8- good sleep habits
9- try to stay hopeful and keep a positive mindset. Find hope and inspiration from different sources such as self help books, spirituality, etc..
@Miniver Chevy
I still have IC even though
I'm a gastric bypass patient all the food he mentioned I can't eat it anyway.
31 years with this Monster.
I wouldn't wish my IC on anyone, even my worst enemy. It sucks royally!!!! So much you can't eat or drink or even just do. Road trips are hell. And with physicians worried about opiates, no doctor wants to really do much to help his or her patients without fearing the Feds breathing down their neck. I've had it my whole life. It's like peeing razor blades with each urination. You can't drink coffee, soda, or any acidic or carbonated beverages without putting yourself in the hospital. Not to mention you pee 20 to 50 times a day. It's a good day if I go 15 to 20 times in a given day. That is from extreme dietary changes to avoid such substances, but stress is very hard to controlled.
Have you tried Gabapentin and or Cymbalta for the pain?
I'm 65 yr old male. I've had hematuria since 2011. Mar, 2015 a urologist said I might have carcinoma insitu during a cystoscopy. The removed tumor was benign & the path report stated severely inflamed bladder with asymmetrical bladder wall thickening. My pelvic/penile pain is so great that I'm practically disabled. I've not found a remedy for IC/BPS (yes, the named was changed from PBS). I know this for a fact: I would not wish IC/BPS on my worst enemy. This mdconversation video is by far the clearest definition of IC/BPS I've seen; I'm surprised it has no more than 25K views. IMHO the number of folks with IC/BPS is so small and because it's so difficult to diagnose, there's not a pressing need to find a cure. But I'm hanging in there; even hoping for a miracle!
Carl Olson Have you heard of DMSO treatment? I read somewhere that the FDA approved it for the treatment of interstitial cystitis and it's a natural solvent that can reduce scar tissue and even dissolved it and helps with inflammation, I've been suffering from chronic prostatitis and bladder pain I've been looking into DMSO and iodine, but I'm not sure if there's Dr's that do this treatment. Hope you find a treatment to heal yourself and wish you well, hang in there. Try a Internet search for DMSO, it's interesting stuff.
dmso worked for me for a year then stopped
Try not drinking milk-drink oatmilk soya etc. Made a big difference to me.
Very interesting. I'm 20 and have ic, which is annoying being a guy because all the urologists that I saw we're really skeptical of the diagnosis of ic. Thanks for the information though, I really appreciate it. Good luck to all my fellow icers out there.
Derek Hart I am so sorry derek. I was bedridden for 8 years and went into remission with elavil
Sunmayden518 what was the dosage of your elavil? Do you still take it?
I get the same reaction from my doctor and it angers me so much cuz I'm in constant pain
same both but I'm 18 have you had help
@@johnhenry6797
Get a different doctor women urologist are better than the male doctors I was had seen 5 male doctors and one had the nerve to tell me to stop complaining too much like a child.
Next day I reported him and started seeing a female instead..
I'm not cured, just no more insulting me..
I was diagnosed at 8 years old, been dealing with it for about 23 years and it is so hard for people to understand.
Dr Harvey cured me from IC, Contact Dr Harvey for the cure via (drharveyphytotherapy@yahoo.com) Whatsapp: +1 (971) 666-3103
Does ultrasound showed ur bladder normal?
Did your uroflomatry report came normal?
IC ruined my life. thanks for the video
i'm so sorry. i hope you are better now. Prayers, begging for healing....., I can't believe this can happen and go on for indefinite.. It hurts so bad. At least with cancer or terminal illness...you can plan on healing or being relieved of the torture via passing.
Mine too...
I'm sorry you're going thru this too💜
fuck you ic you evil bastard
Same😔
Edit: Nevermind, it was just an infection
Wow...itas crazy and kinda nice to Finley have a name to what I have been suffering from for 17 years!!! I have so much other things going on we finely figured this part out!!!! Insane!!!!!
It’s such a relief to understand more .lm in my 17th year 😔
@@kellie4225
I'm so sorry 😞
I've had it for 31 years now I'm 56 year's old still battling the evil 😈 disease 😢😢
I just got diagnosed with it, it feels just like a bad infection and it’s extremely painful
Does ultrasound showed it? Does ultrasound or scan can hint about it?
Did your uroflomatry report came normal?
Can’t express enough how painful this is… to everyone suffering I pray you find relief. If you have, please tell me how! Can’t live like this.
I had the same problem and I learned how to control the terribles symptoms of this condition: I take 1 or 2 grams of aminoacid L-ARGENINE on an empty stomack , It is cheap and you can get it in any drugstore. Please try it.
Hi there, I hope your symptoms have gotten better and you are living a full life and enjoying being pain free. If not, I can offer a few pieces of advice having gone through this hell. While I have not been officially diagnosed and my urologist dismissed me entirely, I suspect I have this condition. I felt pressure/urgency in my bladder that reached a peak about three days ago that had me begging for mercy and considering some "alternatives" so I completely understand pain, also have had kidney stones and cavities before so I am well acquainted to extreme mind bending pain.
What helped me was, bare bones diet. Eliminate everything and eat no inflammatory/irritating foods such as rice and oats, I also reduced my water intake slightly (fuller bladder made it hurt more) create an environment for your bladder that is conducive to healing, remove triggers essentially. Try 1/4 teaspoon baking soda (it's like .50 cents for a small box) and 1/2 cup water, take a big dose of ibuprofen to reduce inflammation as well. All these together worked for me and my pain completely stopped.
My heart and soul goes out to those suffering with this bullshit, it's inhumane and cruel beyond words. Stay hopeful, it will get better. if you need to eat rice and chicken for the rest of your life, by all means do what you have to in order to never have a flare up again!
also avoid unprotected sex, I think that is what provoked mine as I may have had a compromised bladder wall and foreign bacteria got in through my urethra and finally did it in. Be kind to your bladder, treat it like its a fragile glass statue and watch how you sit and move as to not hurt it. Best wishes and I hope every last one of you suffering find relief and peace because I completely relate to what you are feeling
THANKS FOR THIS. INFO. I HAVE. HAD SINCE 2005. SEVERAL. SURGERY. AND HERNIA SURG AND. NOW IN KIDNEY STAGE 2. AND LIVER DAMAGE. I HOPE. THEY GET TO BOTTOM. OF THIS.
Only we know what IC is. Going through hell.
Dr Harvey cured me from IC, Contact Dr Harvey for the cure via (drharveyphytotherapy@yahoo.com) Whatsapp: +1 (971) 666-3103
Yeah thats true
You ain't lying 😢😢
What seems like interstitial cystitis can be oxalate toxicity, especially if you took a lot of antibiotics. Antibiotics don’t just kill off bad bacteria, they also kill off the good bacteria that break down plant oxalates. That can result in the formation of sharp microscopic oxalate crystals that get deposited in tissues and cause pain. The pain can feel urinary, vaginal or both. Also, some people get oxalate toxicity without it being triggered by taking antibiotics. It’s worth looking into a low-oxalate diet.
Raw garlic helps when my symptoms return. I take one or two cloves and chop it up into small bits that are easy to swallow. I tried using a garlic press but it smashed it up and it became too intense to swallow. It would instantly make me feel nauseous. So I went back to chopping it by hand. I put it in a shot glass, fill it with water and then take the shot. My symptoms usually go away within 30 minutes to an hour. Idk why it works but it does. 🤷♀️ Putting a heating pad or something similar on my lower abdomen helps as well. Feel better y’all! 💜
Interesting…apple cider vinegar helps me. I’m going to try the garlic cloves.
You had urine urgency?
Because in garlic there is a lot of estrogen,and estrogen help with healing
I have this. It is what I have. Since my hysterectomy 3 months ago, that's kind of when this began, but I also had a mild case of covid (third).
Don't know if I had IC but had a sore bladder for 8 years, had antibiotics etc and lived with the pain. My dentist (of all people), unprompted told me he had lived with a sore bladder until he stopped drinking milk and drank milk alternatives like oatmilk, soya milk etc. I followed his advice and noticed a good difference in 3 days and after 9 months I feel like a new man. I would say I'm 95% better. The odd twinge probably because of milk in various items one may eat because of milk in them. Also I stay away from cheese, yoghurt etc (dairy products). Don't know if this might help anyone with IC but why not try it for say a week and see if there is a difference-you have nothing to lose.
Dr Harvey cured me from IC, Contact Dr Harvey for the cure via (drharveyphytotherapy@yahoo.com) Whatsapp: +1 (971) 666-3103
I was very confused of my ic...but after watching this i get to know that which type of ic iam having...thanks for the video..its a detailed one..infact i searched alot about it but no result was found....
I got food poisoning 2 years ago. Shortly after I had these symptoms. I'm going to Doctors about it now. It's so painful! I just want it to go away.
I take Elmiron and an antihistamine. It is well controlled now, unless I eat fried foods with ketchup, eggplant, hot sauce, alcohol, Dunkin Donuts Coffee, and more.
Food grade DMSO can be ordered thru Amazon or eBay
@@laurafeher9694 Wow I didn't know that! Is the food grade taken orally? Do you have suggestion for a good quality brand of the ones available on Amazon?
I've only heard of DMSO instilled into the bladder for IC, so your comment caught my eye.
Dunkin Donuts Coffee messes me up also whereas other coffee doesn't. It's weird.
@@pagemastrogiovanni9195
No caffeine or decaffeinated sodas either it will cause inflammation.
I can't eat nothing acidic not even yogurt. nothing with nitrate, tomatoes 🍅and all the fruits that has acid 🍇 grapefruit, cranberry juice, apple 🍎 juice, mangoes......
And I'm from Cape Verdi Island we have lots of fruit trees and can't enjoy them..😢
Thank you for sharing this with us on here. I found it very interesting and I am sure it will be helpful.As I suffer a lot with bladder infections and trouble.A lot of pain and burning sensation.
U had IC??
I have symptoms but it goes away in a hour it usually comes after i take a crap once in a while it is not frequent.
I feel sad and upset that my job triggered me to have this problem. I’ve gotten uti before but this time got hard for me to go to the restroom because my job wasn’t allowing me to. Now I am dealing with this issue for the rest of my life sad to say.
Dr Harvey cured me from IC, Contact Dr Harvey for the cure via (drharveyphytotherapy@yahoo.com) Whatsapp: +1 (971) 666-3103
I started getting the pain in my pelvis in 2012 i finally got told in 2014 this is what i had and i had it bad it cant b cured at all :( i am only 25 years old and this has messed my life up so much its depressing :( i am in agony nearly very day with it on constant high pain relife yet still always hurting me this vidoe helped my understand more about my illness so thank you just wish there was a cure for this illness as its messed me and my life up :( so sad
lisa boniface I am so sorry lisa; don't give up mine went into remission
Hi Lisa, I find relieve drinking 2l water a day and in case of pain I add sodium bicarbonate or potassium citrate (which is the main component of cystopurin medication) or lemon. All of them alkalines your urine (you can check the ph level buyng ph strips from a pharmacy)
Please stay strong..I drink@least 40ounces of water/day&avoid sodas,sugars,&acids..no more pizzas...eating steamed greens/carrots;jasmine rice miso soup..eat clean & your bladder will settle down I also take 10mg of Elavil to relax my bladder*taken@🌙 night...still have to per every 1.5 hours...I accept this...pain diminishes you can do this
Don't know if it might help but it helped me-don't drink milk and avoid dairy products. Drink oatmilk, soya etc
I have just been diagnosed with this condition and I am considering suicide. I cannot imagine living my life with this condition. This is too much. I’m on opiates and they are starting to not work. Trying to work every day and just breathe through it but I can’t. This pain is like a thousand fires are constantly burning inside me. And I just can’t live life this way. It is not living.
I understand darling I feel the same. My world is constant pain with my bladder and all over due to fibromyalgia 😢 Don’t give up Darling we will find a way to help xxx
Please don't do anything drastic 🙏. I'm here too because of the symptoms. Peeing daggers is literally the worst feeling I've ever felt. But losing someone close is somehow worse. Hang in there, your not alone.
@@consciousstudiopottery ALTERNATIVE HERBAL TREATMENT CURED ME FROM CYSTITIS UTI, I TOOK THE MEDICATION FOR 21 DAYS
I am in the same boat. I can’t get a good night sleep. The pain goes to my back mostly and it goes to all over my upper body. I am considering long fasting but I haven’t had the willpower yet. Fasting helps to heal our body on itself. Consider that and you will do it eventually. Don’t give up❤️🙏
@@AmSuperBlessed oh my goodness I will look into this. Most days I’m in pain I don’t want to eat so this won’t be too hard for me. How long do I need to fast.
The cultures in our nations are not capable of picking up the bacterial infections. Seek more In depths urine testing. Such as molecular, DNA, found at PathOGenius Labs in TX.
I put IC in remission for an entire year with eating proper bland foods and just water and moderate exercise and using stretches if i would feel it coming on. I was at the point where i could even get away with eating some of the foods that cause irritation and felt like i had finally cleared the hurdle. I then out of nowhere got a UTI and rushed to treat it asap to avoid a reoccurrence of symptoms but it was too late, and all the symptoms came back with a vengeance. Time to reset the clock back to 0 and try to overcome it again. I am self-diagnosed also lol.
how you been ?
Yup that is what did me in, didn't catch a UTI but did get this extreme pain after having sex and was cleared multiple times of any bacteria or STD's thankfully. I think some bacteria did get in through the urethra and did some damage and my body did clear it up and all the water I drank flushed it out but the microbes still probably did damage to my bladder lining and compromised it, then substances in urine irritated it and caused it to flare up, after staying away from inflammatory/irritating foods i.e. spices, sauces, carbonated drinks, citrus etc I am pain free as of last night, and I never thought it'd get better but here I am, a functioning normal every day person once more. the whole time I was going through it I was like "I just want my old problems back" lol
so my recommendation to others is stay away from bladder inflaming foods, take lots of ibuprofen and 1/4 teaspoon of baking soda in 1/2 cup water and let your bladder lining heal until you introduce other foods back in. Also don't be an idiot like me and have unprotected sex, I think microbes still get in and do damage despite not being a full blown infection warranting antibiotics, plus communicable diseases are a thing so wear protection obviously even though it's not as pleasurable. I was lucky that I didn't catch anything and relied solely on the person word they were clean and that's very foolish, sex is too risky lol
Women with IC are 30x more likely to develop Lupus. I found out about 6 months ago I have IC and I was researching it and that popped up.
Cindy Luhu That's so scary! I already have Fibromyalgia, Hashimotos & Coeliac which all up my chances of Lupas, now I'm pretty sure I have IC. I'm also losing hair for unknown reasons even though my Dr insists I don't have Lupas (at this point). I'm so scared of developing it!
L Burns Mine ending up not being IC. (I think). I went to my Urologist and he performed a few bladder instillations and went in and stretched my urethra. I haven't had problems since then. He said I had a lot of scar tissue in my urethar when he got in there. I still believe I have some autoimmune stuff going on that hasn't been diagnosed. I am going to have to see a specialist at one point in time. Have you had the instillations? My Urologist said sometimes it will rebuild the lining of the bladder because it has Heparin in it. I went thru 6 months of hell. But like I said, the instillations (I had 2) and the urethral stretching worked for me. Bless your heart, I know how it feels and it is scary. Some people have it so bad that they can't function. Keep me posted!
urethra
I also had all the symptoms of UTIs but my cultures were always negative. Symptoms so bad with pus, blood, you name it but negative cultures. That is why my Urologist thought it was coming from my urethra and not my bladder and etc. I always had aseptic, clean urine in my bladder. That ruled the bladder out. Since I was having burning, tingling, constant pressure, urethral spasms he thought it was my urethra.
Cindy Luhu Thanks for responding, you're too sweet! Really interesting information you've given me here, something to definitely consider for myself. I haven't had instillations at all, I've only recently started to really look into all of this. I'm glad to hear that worked for you, relief from chronic pain like that must be amazing! Thanks again, I am at least for hopeful for the moment 😊
i added my story in here as a reply to someone so you may have to scroll and find it. i am not sure if you all are aware of this but this video is missing 1 piece of possibly true information that i have come across after doing extensive research regarding this condition/disease. this condition has been linked to fibromyalgia and it has been linked to IBS (irritable bowel syndrome). i also have questions for all the commenters on this video. do you all get really bad aches in your hip joints? do you have water retention/edema in the legs? do any of you get nausea and the occasional vomiting spells?
Thank you a lynn....I suffer terribly with this disease and will also add that it is linked to lymes disease, migraine headaches and constipation. I also deal with a tremendous amount of swelling. I am dealing with an 8 week flare with only 4 days of relief in between right now. I cannot wear pants or jeans at all and I am not a skirt girl at all but that is my only option now. I feel for all of you suffering with this awful monster within us. Diet and stress are my main factors that affect me, plus I am lactose, so I am basically on a very limited diet ....I pray everyday a cure will be found because this is very depressing and painful to say the least!!!
What do u mean this has something todo with ibs?
I thinks spasms is the CAused of this
yes!!!!! I have very bad swelling in both legs from my knees to the tips of my toes and doctors can't figure out what's causing it. I also have horrid aches and pains in my hips that run down my legs sometimes and I call them " hip flare ups " and sometimes they hurt so bad in my hips I can't sit down at all!!!!!
a lynn interesting. I'll have to read your story.. I've just started researching IC and I'm pretty sure I have it. Interestingly I also have Fibromyalgia & IBS (as well as Hashimoto's & looking at Coeliac possibly). I get really bad aches in my hip joints (and everywhere else!!) and I definitely have water retention!
I have had mine for 15 years. Interestingly no one diagnosed for years. Even the urologist didn’t give me good insight. And now being in healthcare myself I have figured it out but I don’t know what to do to fix it
To anyone suffering from this, I also suggest to get tested for embedded/chronic UTI, hope you all find relief soon!
Can someone here please message me as I have been tested for everything had seen urinology and still nothing I think I have this !!!!i get excruciating stinging and burning
Look into CUTI
Had this since 17 years old. 39 now.
I’m 43 and I have this since 1998 after my second daughter
This is excellent thank you
Wow. I have a catheter and I'm experiencing bladder spasms and it's very painful ! I always heard that drinking pure cranberry juice but lately it has worsened
Avoid cranberry juice too acidic..go alkaline..greens juiced&cut with Apple&pears to sweeten the bitter greens
D Mannose is better if it is a UTI. it is natural
I've had this for thirty years and really wrecked my life. It's gotten less painful since menopause but not a day goes by I don't have some issue whether it's pain, spasms, urges to pee, etc. In the entire time I've had this the treatment(s) haven't progressed at all. I was lucky to have a urologist who was an expert in the condition but he retired and I've been to three different urologists-none of whom treat any patients with IC and I'm not going to teach them how to treat this.
what did you do to improve?, thanks
Gee, you poor soul. There will be a cure for this someday
30 years 😔 l can’t fathom that! I’m 17 years and at my most frustrated. Coming on and researching this to find so many suffering makes me sad ! I have a lot of knowledge now and feel the same about informing my 5 urologist.😂
Does ultrasound showed ur bladder normal? Can these imaging test hint about it?
What medications can cause inflammation of the bladder?
CAC Sheet Dhara Syrup is pure herbo mineral ayurvedic formulation which works on doshas of the body especially pitta doshas. It mainly consists of herbs like Ajwaion, Kapur (camphor) and Mint leaves that provide a cooling effect and helps to reduce burning sensation during micturition. it also controls mood swings, bloating and nausea.
My mom has IC and is freaking out because I’m showing signs of developing IC
I was diagnosed with Interstitial cystitis in 2018 and I have tried everything I could to heal myself, but it was all to no avail, until I saw a post on a health forum this herbalist through his email and he prepared me a herbal cure for Interstitial cystitis and sent it to me via the delivery service of UPS from the company, when I received this herbal cure. They gave me step by step instructions on how to apply it, when I applied it according to the instructions I was totally cured of this disease within 5 months of use, I am now Interstitial cystitis free, all thanks to Dr. Timothy You can also contact this great herbalist for help by email: timothydouglas3612@gmail.com or contact Dr. Timothy through his whatsapp number: +1(239) 977-4390 He is also specialize in treating all kinds of diseases, VIRUS HERPES , HEPATITIS B, CANCER, BRAIN DISEASE, INFERTILITY, DIABETES EPILEPSY AND MORE ...... He will also be of help to you
Does ultrasound showed something wrong with bladder?
Can EDS be related to this...
MzClementine I think so although there seems to be no literature acknowledging comorbidity. I’ve had IC since 1999 at age 15. I’m finally seeing a geneticist for hEDS. My mother has the diagnosis, and I can already see I meet the criteria.
I’ll be asking the doctor about a link between IC and EDS.
Has anyone done the potassium test? My doctor wants to do it and I really don’t want to
ALTERNATIVE HERBAL TREATMENT CURED ME FROM CYSTITIS UTI, I TOOK THE MEDICATION FOR 21 DAYS
It's beyond awfully painful...😢
I feel like I'm the only guy that has it
Cymbalta seems to help my IC a great deal
I was diagnosed with Interstitial cystitis in 2018 and I have tried everything I could to heal myself, but it was all to no avail, until I saw a post on a health forum this herbalist through his email and he prepared me a herbal cure for Interstitial cystitis and sent it to me via the delivery service of UPS from the company, when I received this herbal cure. They gave me step by step instructions on how to apply it, when I applied it according to the instructions I was totally cured of this disease within 5 months of use, I am now Interstitial cystitis free, all thanks to Dr. Timothy You can also contact this great herbalist for help by email: timothydouglas3612@gmail.com or contact Dr. Timothy through his whatsapp number: +1(239) 977-4390 He is also specialize in treating all kinds of diseases, VIRUS HERPES , HEPATITIS B, CANCER, BRAIN DISEASE, INFERTILITY, DIABETES EPILEPSY AND MORE ...... He will also be of help to you
🙏🙏💙💙
आपने बहुत अच्छी जानकारी साझा की है। मैं भी इस समस्या से गुज़रा हूँ। मुझे उस समय बहुत बुरा लगा। मैं कई क्लीनिकों में गया, लेकिन परिणाम के कारण मैं हिम्मत हार रहा था। तब किसी ने उन्हें Planet Ayurveda के बारे में बताया, वे वहां गए और उपचार किया। अब वह ठीक हैं। तो, अगर किसी को इस तरह की समस्या या किसी अन्य स्वास्थ्य संबंधी समस्या का सामना करना पड़ रहा है। आपको Planet Ayurveda जाना चाहिए।
I've been told it's because my vagina is too near my bum hole and I get this condition a lot
I was diagnosed with Interstitial cystitis in 2018 and I have tried everything I could to heal myself, but it was all to no avail, until I saw a post on a health forum this herbalist through his email and he prepared me a herbal cure for Interstitial cystitis and sent it to me via the delivery service of UPS from the company, when I received this herbal cure. They gave me step by step instructions on how to apply it, when I applied it according to the instructions I was totally cured of this disease within 5 months of use, I am now Interstitial cystitis free, all thanks to Dr. Timothy You can also contact this great herbalist for help by email: timothydouglas3612@gmail.com or contact Dr. Timothy through his whatsapp number: +1(239) 977-4390 He is also specialize in treating all kinds of diseases, VIRUS HERPES , HEPATITIS B, CANCER, BRAIN DISEASE, INFERTILITY, DIABETES EPILEPSY AND MORE ...... He will also be of help to you
I'm studying ways to treat paruresis and found an awesome resource at Gabs Shyness Guru (look it up on google)
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I have this condition but it only happens when I squirm in my chair too much.
Wow, You shared very good information. My Aunt had suffered from this problem. She was total upset during this. She went to many Hospitals But the result was not good. Then, Someone told him about planet Ayurveda. she went to Planet Ayurveda & got his treatment started. Now she is fine. If you have this type of problem or any other type of health problem. you should go to Planet Ayurveda.
Can u share pic off planet ?? How to use how much take daily?? @Amritpal singh
what is and where is planet ayurveda?
@Amritpal Singh plz rply
Is she absolutely fine by homeopathy?? No medicine required now?
Superb.